The Atypical HUS Foundation

STATE Resources for Rare Disease Patients/Caregivers

 

A Public Service Project presented by

 

State-Specific RARE DISEASE RESOURCE LISTS

State Resources  for Families and Professionals

 

This State-Specific Rare Disease Resource List

serves as a starting point for your information search.   State lists vary in length, and resource entries will be added, modified, and updated on a regular basis. Last Revision Feb. 2015

 

ALL States are Listed

Detailed State-Specific Resource Lists Now Include:

Conneticut       Maine       Massachusetts      Pennsylvania   Rhode Island

For State-Specific Resources -SCROLL BELOW for Lists

Our National Rare Disease Resource List provides an

overview of resources available in various states across America.

Hundreds of Resource Links

to inform and Support Patients, Families, and Professionals

CLICK HERE to view the National Rare Disease Resource List

Resource information and links to be considered for inclusion should be submitted to linda@atypicalhus.org 

 

ALABAMA RARE DISEASE RESOURCE LIST

Alabama Department of Human Resources 

The following programs are offered through the Department of Human Resources: Temporary assistance for needy families; general assistance; food stamps; childcare.

 

Alabama Department of Public Health 
The following programs are offered through the Department of Public Health: Social services; family assessment needs; family care; and child treatment.

Family Voices of Alabama

They provide information, support, and resources to families.

CLICK HERE to view the National Rare Disease Resource List

 Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

ALASKA RARE DISEASE RESOURCE LIST

 

Chronic and Acute Medical Assistance (CAMA) 
The CAMA program is a state funded program designed to help needy Alaskans who have specific illnesses get the medical care they need to manage those illnesses.

Health Care Services - Case Management Services  Medicaid, through their contractor Qualis Health, provides case management services designed for patients with serious illnesses, injuries, and some chronic conditions.

Health Care Services Alaska - Denali KidCare 
Denali KidCare is a State of Alaska program designed to ensure that children and teens of both working and non-working families can have the health insurance they need.

Heating Assistance Program (HAP) – Alaska
Apply for financial assistance for heating and utilities.

State of Alaska Health and Social Services
 
Their mission is to promote and protect the health and well being of Alaskans.

Stone Soup Group

They provide information, support, and resources to individuals and families.

 

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 ARIZONA RARE DISEASE RESOURCE LIST

 

Arizona Consortium of Children with Chronic Illness (ACCCI)

The Arizona Consortium for Children with Chronic Illness (ACCCI) is dedicated to improving the quality of life for chronically ill children and their families through advocacy and education.

Arizona Life Lines
Their goal is to help find insurance for patients with pre-existing conditions .

Office for Children with Special Health Care Needs - Arizona
Their mission is to continuously improve comprehensive systems of care that enhances the health, future and quality of life for children and youth with special health care needs and their families.

Raising Special Kids exists to improve the lives of children with the full range of disabilities, from birth to age 26, by providing support, training, information and individual assistance so families can become effective advocates for their children.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

ARKANSAS RARE DISEASE RESOURCE LIST

Arkansas Disability Coalition  Specializing in disability issues, hey provide information, support, and resources to individuals and families.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

CALIFORNIA RARE DISEASE RESOURCE LIST

 

Parents Helping Parents, Inc. - Sobrato Center for Nonprofits - San Jose

An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.  

Special Needs Resource Foundation of San Diego’s mission is to help parents and advocates in the special needs community overcome challenges of the family’s journey by bringing together people, information and resources.

Family Voices of California, Support for Families of Children with Disabilities  They provide information, support, and resources focused on children with special needs to individuals and families.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

COLORADO RARE DISEASE RESOURCE LIST

Parent to Parent of Colorado
An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.  

Family Voices Colorado - They provide information, support, and resources to individuals and families.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

CONNETICUT RARE DISEASE RESOURCE LIST

 

Information and Resource Centers

2-1-1 Connecticut – This acts as a one-stop connection to local services, from utility assistance, food, housing, child care, after school programs, elder care, crisis intervention and much more. 2-1-1 assists you in finding the help you need and is available by online or by phone if you dial 2-1-1.

ConneCT Kids – The resources on this page, including businesses, commercial enterprises, organizations and groups, are provided as a service to parents.

My Place CT – My Place CT provides a central place to help you get the information, services, and supports you need at home or in the community.

Connecticut State Office of Rural Health - Working together to promote the health of persons living in rural Connecticut through education, communication and partnerships.

United Way 2-1-1
2-1-1’s Health Care Resource Guide is intended to provide information on state, federal and privately purchased health insurance programs for Connecticut residents.

Family Focused Resources

PATH Parent to Parent/Family Voices of Connecticut – PATH Parent to Parent/Family Voices of Connecticut is a network of families providing informational and emotional support to others who have a child with developmental or health related needs. PATH/FVCT reaches out to help strengthen families coping with similar situations in Connecticut.

Connecticut Temporary Assistance for Needy Families (TANF) –  Temporary Assistance for Needy Families (TANF) provides services and benefits to needy families. TANF was designed to give states flexibility to operate programs that support the family unit and encourage families to build a brighter future for themselves

Connecticut Energy Assistance Program –  The Connecticut Department of Social Services offers the Connecticut Energy Assistance Program to provide heating assistance for Connecticut residents by helping to offset the winter heating costs of eligible households. The goal is to ensure that eligible Connecticut residents do not have their health jeopardized by the inability to meet heating needs, for such heating sources as oil, natural gas, electricity, propane, kerosene, coal and wood. Homeowners and renters may apply.

PATH Parent to Parent of Connecticut - An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.  

Child Focused Resources

Connecticut HUSKY Healthcare (SCHIP) – The HUSKY Plan is designed to help all children who do not have health insurance. It includes services under the traditional Medicaid program, but also provides new health services for children in higher-income families and a new coverage option for children who have intensive physical or behavioral health needs

Connecticut School Breakfast and Lunch Program – The National School Breakfast and Lunch programs are administered by the Connecticut Department of Education’s Bureau of Health and Nutrition Services, Child/Family/School Partnerships. They serve as meal programs, with the goal of providing nutritionally balanced, low-cost or free lunches to children each school day. (In schools, or other qualifying institutions such as homes for the physically, mentally or emotionally impaired, group homes, temporary shelters, orphanages, and juvenile detention centers.

Connecticut Special Milk Program – The Special Milk Program (SMP) provides milk to children in schools and child care institutions who do not participate in other Federal meal service programs. Schools in the National School Lunch or School Breakfast Programs may also participate in SMP to provide milk to children in half-day pre-kindergarten and kindergarten programs where children do not have access to the school meal programs.

Connecticut Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) – The Connecticut Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides breastfeeding education and support, nutrition assessment, nutrition education, referrals to health care, and other support and supplemental foods at no cost to qualifying pregnant, breastfeeding and postpartum women, infants and children up to age 5 who are assessed by a health professional to be at nutritional risk (i.e., have certain medical-based or diet-based health conditions).

Connecticut Summer Food Service - The Connecticut Summer Food Service Program (SFSP) helps eligible children get the nutrition they need during the summer.

Children & Youth with Special Health Care Needs and Connecticut’s Medical Home Initiative  -Their focus is to protect and improve the health and safety of the people of Connecticut by in a variety of areas such as preventing disease, injury, and disability, as well as promoting health and wellness.

 

General Governmental Programs and Agencies

Connecticut Department of Social Services -The Department of Social Services (DSS) administers and delivers a wide variety of services to children, families, adults, people with disabilities and elders, including health care coverage, child support, long-term care and supports, energy assistance, food and nutrition aid, and program grants.

Connecticut Department of Public Health – This state branch of services seeks to protect and improve the health and safety of the people of Connecticut though a wide variety of programs and services.

 

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

DELAWARE RARE DISEASE RESOURCE LIST

Child Life, Education and Creative Arts Therapy – CHOP - Delaware 
The goal of the Oncology Child Life, Education and Creative Arts Therapy program is to help children and families cope with the emotional stress and anxiety associated with cancer therapy and treatment. 

Delaware Family Voices, Inc. 
An affiliate of Family Voices, who aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Kelly Anne Dolan Memorial Fund - Delaware
The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

DISTRICT OF COLUMBIA RARE DISEASE RESOURCE LIST

Family Voices of the District of Columbia Inc.  They provide information, support, and resources to individuals and families.

Advocates for Justice and Education Offering a Family-to-Family Health Information Center

 

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

FLORIDA RARE DISEASE RESOURCE LIST

Children's Medical Services
The Children's Medical Services (CMS) program provides children with special health care needs with a family centered, managed system of care

Family Network on Disabilities  They provide information, support, and resources to individuals and families.

Florida KidCare
KidCare is Florida’s children’s health insurance program for uninsured children under age 19. It is made up of four parts: MediKids, Healthy Kids, and Children’s Medical Services Network for children with special health care needs, and Medicaid for kids.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

GEORGIA RARE DISEASE RESOURCE LIST

LifeNet Georgia
The mission of LifeNet is to provide safe, quality air medical service and patient care to the critically ill and injured.

Parent to Parent of Georgia

An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

HAWAII RARE DISEASE RESOURCE LIST

Hilopa'a Family to Family Health Information Center

Offering  information, support and resources to families.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

IDAHO RARE DISEASE RESOURCE LIST

Idaho Parents Unlimited, Inc.

Offering information, support and resources to families.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

ILLINOIS RARE DISEASE RESOURCE LIST

 

The Arc of Ilinois

As a chapter of The Arc of the United States, they ensure that people with Developmental Disabilities are valued in order that they and their families can participate fully in and contribute to their community.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

INDIANA RARE DISEASE RESOURCE LIST

About Special Kids  Families and professionals in Indiana to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics such as health insurance, special education, community resources and medical homes.

Call 2-1-1 2-1-1  Indiana 211 Partnership, Inc. (IN211) is a nonprofit organization dedicated to building the 2-1-1 system for Indiana. The goal is to create a seamless network of information and referral services that enables anyone in Indiana in need of human services to have quick referrals to those who provide them by dialing 2-1-1.

Family to Family
INF2F brings together parents of young children with disabilities, developmental delays or special health care needs so they can share their knowledge, concerns, and experiences with each other.

First Steps 
First Steps’ goal is to assure that all Indiana families with infants and toddlers experiencing developmental delays or disabilities have access to early intervention services close to home when they need them; this is accomplished through the implementation of a comprehensive, coordinated statewide system of local interagency councils called first steps.

Family Voices Indiana

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Healthy Indiana Plan 
The HIP plan covers individuals who do not live with a dependent child, and parents who earn up to approximately $44,000 annually for a family of four, have been uninsured for six months and do not have access to insurance through their employer.

Hoosier Healthwise  This is a health insurance program for Indiana children, pregnant women, and low-income families. Health care is provided at little or no cost to Indiana families enrolled in the program.

Indiana Children’s Special Health Care Services (CSHCS)
They provide supplemental medical coverage to help families of children who have serious, chronic medical conditions. Age birth to 21 years of age, who meet the program’s financial and medical criteria, pay for treatment related to their child’s condition.

RX for IndianaThis website designed to help low income, uninsured Indiana residents get access to patient assistance programs where they qualify for free, or nearly free, prescription medicines.

TANF is a program that provides cash assistance and supportive services to assist the family, helping them achieve economic self-sufficiency.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

IOWA RARE DISEASE RESOURCE LIST

Family to Family Iowa at ASK Resource Center

Family-centered care, they offer support and resources.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

KANSAS RARE DISEASE RESOURCE LIST

Families Together Inc.

"Encouraging, Educating & Empowering". Assisting Kansas parents and their sons and daughters who have disabilities.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

KENTUCKY RARE DISEASE RESOURCE LIST

Kentucky Family to Family Health Information Center

Family-centered care, they offer support and informational resources.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

LOUISIANA RARE DISEASE RESOURCE LIST

Bayou Land Families Helping Families

Family-centered care, they offer support and informational resources.

Families Helping Families of Acadiana
Our mission is to assist and strengthen individuals with disabilities and their families through a coordinated network of resources, services and support.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

MAINE RARE DISEASE RESOURCE LIST

                               

Resource List Compiled by:  Linda Burke of  The Atypical HUS Foundation

Information and Resource Centers

2-1-1 Maine is a comprehensive statewide directory of over 8,000 health and human services available in Maine. The toll free 2-1-1 hotline connects callers to trained call specialists who can help 24 hours a day, 7 days a week. Finding the answers to health and human services questions and locating resources is as quick and easy as dialing 2-1-1.

The Maine Parent Federation is a statewide organization that provides information, advocacy, education, and training to benefit families of children and adults with disabilities and special health care needs.

A service of the Maine Parent Federation, Starting POINTS for Parents is an online community for families of children with disabilities Providing Opportunities for Information Networking, Training and Support as they learn, share, and connect about the educational and developmental needs of their children.

The Maine Health Learning Resource Center has a health educator at each location and can provide personalized help to patients to learn about a disease or treatment, as well as connect people with outreach, awareness, and resources.

The University of Maine Center for Community Inclusion and Disability Studies (CCIDS) brings together the resources of the university and Maine communities to enhance the quality of life for individuals with developmental disabilities and their families. They are committed to enhancing and promoting the interdependence, productivity, integration, and inclusion of Maine citizens with disabilities and their families.

Family Focused Resources

Gaining Empowerment Allows Results (GEAR) helps connect parents to prevent isolation and share knowledge gained by experiences with their children’s disabilities. Through parent-to-parent sharing of experiences and knowledge, G.E.A.R. Parent Network empowers parents of children with behavioral health needs to build on their family’s strengths and to advocate for their family’s needs.

The Maine Alliance of Family Organizations (MAFO) is a statewide alliance that formed to better serve families of children with disabilities and special health care needs, and to strengthen family voice.

The MAFO video: Working Together, Growing Stronger offers personal stories of the importance of family organization support.

Family Information Specialist or FIS (DHHS Dept. of OCFS) Providing information and referral services about resources needed by parents of a child with special needs, the FIS can offer resource lists that include such varied information as specialized summer camps, support groups, medical professionals, case management, and home & community based services.

Each FIS is a parent of a child with special needs who works with families and the Office of Children and Family Services (OCFS) to meet the needs of the children, also working closely with many different professionals and organizations.

Southern Maine Parent Awareness (SMPA) is dedicated to providing information, referral support and education to families who have children and youth with special needs throughout Maine. They offer individualized family conferences, consultation via telephone and email, and assistance in preparing for IFSP/IEP meetings.

 

Child Focused Resources

The Maine Children’s Alliance (MCA) is committed to improving the lives of Maine’s children, youth, and families. Acting as nonpartisan, data-focused advocates for public policies that improve the lives of Maine’s children, youth, and family, the MCA seeks to link research to practice and public policy as they serve as a resource on children and family policy issues.

Department of Health and Human Services, Office of Children and Family Services (OCFS) provides information and referrals for children to their 21st birthday with developmental disabilities/delays, mental retardation, Pervasive Developmental Disorder (PDD)/autism, and mental health disorders. The Office of Child and Family Services (OCFS) serves Maine’s children and their families through the Divisions of Child Welfare, Children’s Behavioral Health, Early Childhood, and Public Service Management.

Children’s Behavioral Health (CBH) provides information and assistance with referrals for children and youth with developmental disabilities/delays, intellectual disability (mental retardation), Autism Spectrum Disorders, and mental health disorders. Behavioral health treatment and services are available for children from birth up to their 21st birthday.

Families and Children Together (FACT) Their family focused programs encourage and foster the development and healing of children with emotional and behavioral challenges.

Camp Sunshine provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support.

 

 

Programs and Services

Camp Sunshine provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support. Bereavement groups are also offered for families who have lost a child to an illness.

The Morrison Center is a private, not-for-profit agency that specializes in the support and development of children and adults with and without disabilities. Offering a broad range of day programs and services, they support individuals and their families and encourage maximum growth and independence. Programs include the Friends First Preschool & Child Care Program, a K-12 School Program, and the adult AHEAD I and II programs.

The Maine Division for the Blind and Visually Impaired (DBVI) offers comprehensive services for visually impaired and blind individuals of all ages. Offering vocational rehabilitation services to help individuals retain or return to employment, DBVI can provide individual counseling, guidance, and vocational assessment as well as orientation and mobility instruction to develop independent travel skills.

Maine Health Learning Resource Center offers a helpful website for anyone affected by cancer.

National Alliance on Mental Illness of Maine (NAMI Maine) is dedicated to improving the quality of life of everyone affected by mental illness. Services are provided both directly and through a statewide structure of local affiliates and support groups. NAMI Maine offers compassion and provides social/emotional support, as they educate, inform, provide resources, and advocate for quality services.

The Pine Tree Society provides Maine children and adults with disabilities the opportunities and the means to create better lives for themselves and their families.  People with disabilities may feel left out or isolated, but with the help of Pine Tree Society, they lead richer, more socially connected lives. Sharing a spirit of innovation, we help discover ways to break down barriers that many find insurmountable. Our service areas are: Assistive Technology, Communication, Community Supports, and Accessible Recreation.

Special Olympics transforms lives through the joy of sport, every day, everywhere. The world’s largest sports organization for people with intellectual disabilities, it serves nearly 4 million athletes in more than 170 countries.

  

Location-Specific Patient Services


CarePartners 1-877-626-1684 www.mmc.org/mh_body.cfm?id=3441
coordinates the provision of donated health care services for low-income, uninsured residents in four Maine counties (Cumberland, Lincoln, Waldo, and Kennebec). The program, a partnership among MaineHealth, physicians, hospitals, and other health care providers, helps community members who don’t qualify for public or private healthcare coverage programs get comprehensive, medically necessary healthcare.

The Children’s Center, a nonprofit organization, advocates for children with differing abilities and their families by offering programs that encourage individual growth and development of children, providing support for their families and promoting community inclusion. Respite Care is a statewide program, funded by the Department of Health and Human Services (DHHS) and run by contract agencies in Portland, Augusta, and Bangor. Respite Care supports families raising children with special needs. The Children’s Center is located in Augusta and offers a fully accessible playground that includes a unique 30-foot-long water feature.

The Beth Wright Cancer Center in Ellsworth offers support groups, resource materials, informational lectures and films, wellness activities, Reiki, Yoga, and transportation assistance. 

The Patrick Dempsey Center for Cancer Hope & Healing provides free support, education, and integrative medicine services to anyone impacted by cancer. Patients served are in Androscoggin, and Cumberland.

 

Advocacy

Client Assistant Program — C.A.R.E.S. is a privately held company that provides advocacy, case management, and assistive technology for Maine’s citizens with disabilities. C.A.R.E.S. offers advocacy, case management, program evaluation, and policy development and administers three federally funded programs including Independent Living Services (ILS) for veterans with disabilities through the Veterans Administration (VA) at Togus.

Disability Rights Center (DRC) provides individual advocacy through several different programs it operates. Each program has eligibility requirements and case selection criteria. Descriptions of the programs, the eligibility requirements, and the case selection criteria are available through DRC. DRC is available to provide training to individuals with disabilities, providers of services, the general public, and family/friend support networks.

Consumers for Affordable Health Care (CAHC) has worked to protect the rights of health care consumers in Maine. This nonprofit, nonpartisan organization is committed to helping all Maine people obtain quality, affordable health care with activities that include research, advocacy, education, and consumer assistance.

Patient Assistance Programs


MedAccess works with individuals and health care providers to identify ways patients can save money on prescription medications. The free program, administered by MaineHealth, helps patients and health care providers evaluate options.

Many hospitals are committed to treat all patients who need care regardless of their health insurance or financial status. For medically necessary treatment, most offer services to help you arrange for payment of your bill, from insurance billing to payment plans and even financial assistance, which may qualify you for free care or reduced payment. Eastern Maine Medical Center (EMMC) has a representative program similar to other hospitals and clinics throughout Maine; call your local hospital to inquire.

 

Governmental Programs or Agencies
The Department of Health and Human Services (DHHS) for the State of Maine provides integrated health and human services to the people of Maine to assist individuals in meeting their needs within available resources, while respecting the rights and preferences of the individual and family. They strive to deliver services that are individualized, family-centered, easily accessible, preventive, independence-oriented, interdisciplinary, collaborative, evidence-based, and consistent with best and promising practices. For a wide array of programs and resources, see

Department of Health and Human Services, Office of Children and Family Services (OCFS) provides information and referrals for children to their 21st birthday with developmental disabilities/delays, mental retardation, Pervasive Developmental Disorder (PDD)/autism, and mental health disorders. The Office of Child and Family Services (OCFS) serves Maine’s children and their families through the Divisions of Child Welfare, Children’s Behavioral Health, Early Childhood, and Public Service Management.

The Children with Special Health Needs Program’s mission is to improve the health and well-being of this population by developing and sustaining community-based systems of care. Part of the Population Health, the Children with Special Health Care Needs program is affiliated with the Maine Department of Health and Human Services and the Maine Center for Disease Control & Prevention.

The Office of MaineCare Services (OMS) coordinates a variety of programs and benefits, ensuring that they operate under consistent policy in keeping with the Department’s goals and Federal mandates, and are administered effectively and efficiently. Programs include MaineCare (also known as Medicaid), Maine Rx Plus, Drugs for the Elderly and Disabled, and free or low-cost health insurance for families with children and pregnant women.

Katie Beckett is one MaineCare option for children under 18 with serious health conditions. If a child meets the rules for this option, that child may be eligible for MaineCare’s full benefits. Contact your local DHHS office if you have questions about the Katie Beckett benefit and ask to speak with the Katie Beckett Eligibility Specialist.

Maine CITE Program, affiliated with the Maine Department of Education, is the statewide organization designed to help make assistive and universally designed technology more available to Maine children and adults who need them.

Family Information Specialist or FIS (DHHS Dept. of OCFS) Providing information and referral services about resources needed by parents of a child with special needs, the FIS can offer resource lists that include such varied information as specialized summer camps, support groups, medical professionals, case management, and home & community based services.

Each FIS is a parent of a child with special needs who works with families and the Office of Children and Family Services (OCFS) to meet the needs of the children, also working closely with many different professionals and organizations.

The Division of Vocational Rehabilitation (VR) is a Department of Labor program that helps people who have disabilities to find and keep a job. VR helps people who have physical, mental, or emotional disabilities and also assists students with disabilities in coordinating information and resources as they transition from high school to adult life.

The Office of MaineCare Services (OMS) oversees MaineCare (also known as Medicaid), Maine Rx Plus, and Drugs for the Elderly and Disabled.

MaineHealth Learning Resource Center offers a helpful website for anyone affected by cancer:

Medicare provides health insurance for people age 65 or older and under age 65 with certain disabilities.

Maine Health Care

Ensuring that they operate under consistent policy in keeping with the Department’s goals and Federal mandates, and are administered effectively and efficiently. Programs include MaineCare (also known as Medicaid), Maine Rx Plus, Drugs for the Elderly and Disabled, and free or low-cost health insurance for families with children and pregnant women. http://www.maine.gov/dhhs/oms/

The Children with Special Health Needs Program’s mission is to improve the health and well-being of this population by developing and sustaining community-based systems of care. Part of the Population Health, the Children with Special Health Care Needs program is affiliated with the Maine Department of Health and Human Services and the Maine Center for Disease Control & Prevention.

Katie Beckett is one MaineCare option for children under 18 with serious health conditions. If a child meets the rules for this option, that child may be eligible for MaineCare’s full benefits. Contact your local DHHS office if you have questions about the Katie Beckett benefit and ask to speak with the Katie Beckett Eligibility Specialist.

Consumers for Affordable Health Care (CAHC) has worked to protect the rights of health care consumers in Maine. This nonprofit, nonpartisan organization is committed to helping all Maine people obtain quality, affordable health care with activities that include research, advocacy, education, and consumer assistance. 

Education

The Maine Department of Education is committed to shaping an education system that meets the needs of all learners and providing additional support to those who require it. Ensuring that students with special needs succeed in their learning, the Office of Special Services oversees early intervention services to eligible children age birth to under age three and their families (provided under IDEA, Part C) and Free Appropriate Public Education to eligible children age three to 20.

The Office of Special Services, part of the Maine Department of Education/Special Education Services, is responsible for the state’s oversight and support for the delivery of all special education services provided in Maine under the federal Individuals with Disabilities Education Act (IDEA). This includes early intervention services to eligible children age birth to under age three and their families, provided under IDEA, Part C, and Free Appropriate Public Education to eligible children age three to 20.

A guide to Special Education in Maine (online book). Chapter 11 has information on a 504 plan for children with special medical needs.

The Child Development Services system provides both Early Intervention (birth through two years) and Free Appropriate Public Education (for ages three through five years) under the supervision of the Maine Department of Education.

Grahamtastics Connection A nonprofit program that provides laptops and Internet access to connect chronically ill children to their world, particularly vital for those missing school due to hospitalization or treatment schedules.

Travel and Accommodations for Patients

Angel Flight Northeast
1-800-549-9980 arranges free flights for those requiring access to medical care.

Arbor House Located near Central Maine Medical Center in Lewiston, Arbor House provides lodging for patients and their families. For more information about the Arbor House, call 207-795-2398.

Hope Lodge, Boston, MA offers a free place to stay for patients who travel to Boston for treatments (through American Cancer Society 1-800-227-2345). 

CLICK HERE to view the National Rare Disease Resource List

 

 

 

MARYLAND RARE DISEASE RESOURCE LIST

The Parents' Place of Maryland

Offering information, support and resources to families.

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RARE DISEASE RESOURCE LIST
FOR THE STATE OF MASSACHUSETTS

 

Resource List Compiled by:  Patty Weltin Rare Disease United Foundation

The Rare Disease United Foundation is a non-disease specific, state-based organization currently with communities in Rhode Island and Massachusetts. Disease specific organizations provide a wonderful resource for families and are critical to the advancement of research and treatments; however, for a considerable number of diseases no organization exists. The RDUF was formed so that each state has its own community. By connecting on a state level and encompassing all rare diseases, the RDUF can build strong rare communities in each state.

 

The Massachusetts Rare Disease Community (MRDC) is a chapter of the Rare Disease United Foundation, a non-disease specific, state-based organization. By connecting on a state level and encompassing all rare diseases, the RDUF can build strong rare communities in each state.


The Manton Center for Orphan Disease Research at Boston Children's Hospital was created to develop new methods for understanding, diagnosing and treating unusual diseases and to apply this knowledge to make fundamental scientific advances with broad implications for human health. To reach these goals, Children's joined in a partnership with The Manton Foundation to create a center devoted to understanding "orphan diseases" - genetic syndromes, immune system problems, errors of metabolism, neuromuscular disorders and other little-noticed but scientifically important disease processes.

 

MassResources.org is a small nonprofit organization with a big mission: to help make it possible for all Massachusetts residents to get the help and resources they need.  We believe that information about where to go for help, who is eligible for benefits, and how to apply should be easy to find and easy to use.

Disability Resources, Inc. is a nonprofit 501(c)(3) organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently.

 

INDEX addresses the information needs of people with disabilities. We collect and maintain information on a wide variety of programs, agencies, and individual providers in Massachusetts that have something to offer to people with disabilities. INDEX is a project of the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School.

Easter Seals provides services to ensure that children and adults with disabilities have equal opportunities to live, learn, work and play.  Easter Seals’ vision is that all people with disabilities are empowered to reach their full potential. Easter Seals services help people of all ages with all kinds of disabilities, at more than 100 sites in communities all over Massachusetts -- individuals disabled through illness, accident or aging, as well as people born with disabilities.

The 17 Chapters of The Arc of Massachusetts work throughout the Commonwealth to provide services and support to individuals with intellectual and developmental disabilities - such as Mental Retardation, Down Syndrome, Autism, and cerebral palsy - and their families on a case-by-case basis. Use our Chapter by City/Town Directory to find your closest chapter to your town in Massachusetts.

The Bridge Center is a fully accessible 20+ acre campus located in Bridgewater, MA that offers Year-Round, Summer Camp, and Equine Assisted Programs designed for children, teens and adults with special needs.  Formerly known as Handi Kids, The Bridge Center was founded as a 501(c)(3) non-profit organization in 1963 by the Knights of Pythias and has provided quality programming for 50 years.   We offer opportunities to make friends, share experiences, discover abilities and uncover talents – building social, emotional and physical skills to promote full participation in the community.

 The Disability Law Center (DLC) is the Protection and Advocacy agency for Massachusetts.  DLC is a private, non-profit organization responsible for providing protection and advocacy for the rights of Massachusetts residents with disabilities. DLC receives federal, state and private funding but is not part of the state or federal government. 

EK Shriver Center: With inspiration from Eunice Kennedy Shriver and her family, we pursue research, education, and service programs aimed at improving the quality of life for persons with intellectual and developmental disabilities and their families.
The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities.

The Genesis Fund was formed to provide funding for children with special needs.  We strive to ensure these children, who often have multiple disabilities, receive not only expert medical care but also coordinated comprehensive care.

 For over 40 years, the Institute for Community Inclusion (ICI) has worked to ensure that people with disabilities have the same opportunity to dream big, and make their dreams a fully included, integrated, and welcomed reality. As a leader not only in Massachusetts, but also nationally and internationally, ICI strives to create a world where all people with disabilities are welcome and fully included in valued roles wherever they go, whether a school, workplace, volunteer group, home, or any other part of the community

MAB’s Mission is to work with individuals with disabilities to eliminate barriers and create opportunities. Our experience allows us to forge strong community partnerships so that we can meet the pressing need for high quality services and programs and transform lives.

The Tourette Syndrome Association of Massachusetts is an all-volunteer, non-profit organization whose mission is to support the needs of families affected by Tourette Syndrome. Our goal is to advocate for individuals with TS, educate the public and professionals about TS, and promote awareness.

Massachusetts Deafblind Family Alliance: We are a grassroots group united to promote and protect the interests of our family members with deafblindness. We endeavor to be the voice of those who cannot speak for themselves.

Massachusetts Government Portal to sites listing various Massachusetts government agencies, organizations, and resources.

Massachusetts Department of Education      

Special Olympics Massachusetts provides year-round sports training, athletic competition and other health-related programming for athletes with intellectual disabilities throughout the state.

New England Hemophilia Association is the leading organization in New England dedicated to empowering individuals and families with bleeding disorders and building local and region-wide communities for them by providing diverse information sources, dynamic programming, individual and legislative advocacy, and emergency financial aid.

The Parent-to-Parent Program brings together parents facing similar challenges in raising their children with special needs. We believe that sharing experiences provides strength and support to each other.

Prader-Willi Syndrome Association of New England PWS is a non-inherited genetic disorder which is most often associated with a random deletion of the 15th chromosome. It is estimated that PWS occurs in 1 in 10,000 births. It affects both sexes and is unrelated to race. The cause is, as yet, unknown.

The mission of Seven Hills Foundation is to promote and encourage the empowerment of people with significant challenges so that each may pursue their highest possible degree of personal well-being and independence.

Through support, challenge and opportunity, Triangle empowers people with disabilities and their families to enjoy rich, fulfilling lives. We are committed to helping the world recognize that we are all people with ability.

VSA Massachusetts is part of an international network of VSA organizations serving 35 states and over 50 other countries.  VSA is affiliated with The John F. Kennedy Center for the Performing Arts in Washington, D.C.  The letters VSA now reflect the Vision of an inclusive community, Strength in shared resources and Artistic expression that unite us all.

CLICK HERE to view the National Rare Disease Resource List

 

 

MICHIGAN RARE DISEASE RESOURCE LIST

 

Children's Hospital of Michigan - Kids Health Library

Information and health resources, to include educational and recreational activities for children and teens.

Michigan Family-to-Family Health Information & Education Center 

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Michigan Public Health Institute

They provide information and resources related to medical aspects, health, and wellness.

The Arc Michigan

As a chapter of The Arc of the United States, they ensure that people with Developmental Disabilities are valued in order that they and their families can participate fully in and contribute to their community.

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MINNESOTA RARE DISEASE RESOURCE LIST

 

Family Voices of Minnesota

An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.

PACER Center (Parent Advocacy Coalition for Educational Rights)

Helping parents learn, connect, and explore educational issues and resources.

 

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MISSISSIPPI RARE DISEASE RESOURCE LIST

Institute for Disability Studies, The University of Southern Mississippi

Providing disability information, insights, and resources.

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MISSOURI RARE DISEASE RESOURCE LIST

 

Missouri Family-to-Family Resource Center at UMKC-IHD

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Sharing Our Strengths (SOS) Support Matching Network

Missouri's parent to parent/peer support network for parents of children with developmental disabilities or special healthcare needs, individuals with disabilities, and professionals.

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MONTANA RARE DISEASE RESOURCE LIST

 

Parents, Let's Unite for Kids

Helping parents learn, connect, and explore educational and health issues and resources.

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NEBRASKA RARE DISEASE RESOURCE LIST

PTI Nebraska

The mission of PTI Nebraska is to provide training, information and support to parents in Nebraska who have a child birth through twenty six with special needs.

 

The Arc of Omaha at the Ollie Webb Center
Their mission is to enrich the lives of individuals with developmental disabilities and their families through support, programs and advocacy.

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NEVADA RARE DISEASE RESOURCE LIST

Family TIES of Nevada is dedicated to providing culturally competent support, information, and assistance to achieve family-centered care for individuals with disabilities or special health care needs through family, community and professional partnerships.

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NEW HAMPSHIRE RARE DISEASE RESOURCE LIST

New Hampshire Family Voices

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Parent to Parent of New Hampshire

An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.

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NEW JERSEY RARE DISEASE RESOURCE LIST

Catastrophic Illness in Children Relief Fund

The Catastrophic Illness in Children Relief Fund is intended to assist in preserving a family's ability to cope with the responsibilities which accompany a child's significant health problems.

Child Life, Education and Creative Arts Therapy - CHOP - New Jersey

The goal of the Oncology Child Life, Education and Creative Arts Therapy program is to help children and families cope with the emotional stress and anxiety associated with cancer therapy and treatment.

Kelly Anne Dolan Memorial Fund - New Jersey
The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.

NJ Dept. of Human Services - State Subsidies for Childcare
Low- and moderate-income working parents can receive state subsidies for child care, including preschool instruction, after-school programs for children up to age 13, and care for children and teens with special needs.

NJ Family Care
NJ Family Care is not a welfare program, but rather the State of New Jersey's way of providing affordable health coverage for kids and certain low-income parents.

New Jersey Statewide Parent to Parent
An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.

Statewide Parent Advocacy Network (SPAN)

Helping parents learn, connect, and explore educational and health issues and resources.

 

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NEW MEXICO RARE DISEASE RESOURCE LIST

Parents Reaching Out
Parents Reaching Out is a non-profit organization that works with parents, caregivers, educators, and other professionals to promote healthy, positive and caring experiences for families and children.

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NEW YORK RARE DISEASE RESOURCE LIST

Famliy Health Plus - New York Dept. of Health
Family Health Plus provides comprehensive coverage, including prevention, primary care, hospitalization, prescriptions and other services.

Parent to Parent of New York State

An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.

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NORTH CAROLINA RARE DISEASE RESOURCE LIST

 

Exceptional Children's Assistance Center (ECAC)

Providing information and resources to assist families.

Family Support Network of North Carolina
Families benefit from the help and support that other families can provide.  From information about their child's special needs, families can learn about available resources and make informed decisions about services and support.

Family Support Program of North Carolina
Family Support Network of North Carolina promotes and provides support for families with children who have special needs.

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NORTH DAKOTA RARE DISEASE RESOURCE LIST

Family Voices of North Dakota
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities

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OHIO RARE DISEASE RESOURCE LIST

 

Family Voices of Ohio

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities

Special Needs Resource Directory - When you have a child with special healthcare needs, you face the constant challenge of finding information and resources. The Special Needs Resource Directory, created by the Complex Care Center at Cincinnati Children’s and supported by the Family Resource Center, can assist parents, caregivers and healthcare providers identify, evaluate and access necessary services and supports. We can quickly connect you to local, regional and national websites to help you:

StarShine Hospice - Cincinnati Children's
The StarShine Hospice staff at Cincinnati Children's Hospital Medical Center provides various services to patients and families in cooperation with your child's family and under the direction of your child's physician.

 CLICK HERE to view the National Rare Disease Resource List

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OKLAHOMA RARE DISEASE RESOURCE LIST

 

The Oklahoma Family Network 
The (OFN) Family-to-Family Health Information Center informs and connects individuals with special health care needs and disabilities, their families and professionals to services and supports in their communities.

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OREGON RARE DISEASE RESOURCE LIST

FACT Oregon
Empowering Oregon Families experiencing disability or chronic health concerns.

Oregon Family to Family Health Information Center

Providing information and resources to assist families.

 

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PENNSYLVANIA RARE DISEASE RESOURCE LIST

Resource List Compiled byCarly Schmidt 

Kelly Anne Dolan Memorial Fund - Pennsylvania
The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.

 

MedGift

MedGift is a web page where patients and their advocates are invited to create their own Support Page to share with friends and family.  The page is designed to connect patients with people who can provide financial, physical, or emotional support.  Examples of uses for your MedGift page include setting fundraising goals, collecting donations, finding volunteers who will help patients with daily tasks and chores (transportation, pet sitting, lawn care, meals, etc…), keeping friends and family updated on patient progress, and allowing visitors to leave words of encouragement.

 

Pennsylvania Patient Safety Authority

The Pennsylvania Patient Safety Authority is a government agency dedicated to reducing and eliminating medical errors and promoting patient safety in hospital.  The Authority goes through all reports of malpractice and recommends safer methods to medical workers.  The site also includes a mailing list that patients can sign up for to stay updated on new medical advisories.

 

Partnership for Prescription Assistance for Pennsylvania

The Partnership for Prescription Assistance is an organization that helps qualified patient that do not have prescription drug coverage to get their medications for free or at a lower price.  Patients need only to fill out an online application and the PPA will connect them with any programs they are eligible for. 

 

AdvoConnection

Search through AdvoConnection’s patient advocate database to find local advocates to assist with a variety of different functions including accompaniment to medical appointments, assistance with understanding conditions and treatment options, helping to make medical decisions, and finding legal assistance with medical errors and insurance issues.

 

Pennsylvania Department of Health

The Pennsylvania Department of Health is the government agency that oversees anything related to health and health care in Pennsylvania.  Its mission is to promote healthy lifestyles, prevent injuries or diseases, and assure quality health care for Pennsylvania residents.  This is a comprehensive site for just about any issues or questions related to health care in Pennsylvania.

 

PennDOT Online Organ Donor Registration

Many states allow residents to designate their wish to become an organ donor, and often drivers can register to have an organ donor decal displayed on their driver’s license.   Share the gift of life, become an organ donor and encourage others to sign up to become organ donors.

 

Pennsylvania Chronic Renal Disease Program

The Chronic Renal Disease Program was designed to provide care for adults with end-stage renal disease.  Its duties include assisting with the cost of dialysis, transplants, medications, and more.  This site includes an application for enrollment in the program.

 

Pennsylvania Insurance Department

The Pennsylvania Insurance Department is the government agency that is tasked with administering any state laws regarding insurance.  Information can be found on the site regarding health insurance, life insurance, and more. 

 

Donate Life Pennsylvania

The Pennsylvania chapter of the Donate Life organization is responsible for raising funds and awareness for organ donation.  It also provides information about what exactly organ donation entails and gives aid to patients in need of a tissue or organ transplant.

 

Gift of Life Donor Program

The Gift of Life Donor Program is a local non-profit organization that helps coordinate transplants for patients and gives support to donors.  Their website includes a wealth of information about the process of organ donation intended for patients, donors, donors’ families, and health care professionals.

 

The Center for Organ Recovery & Education

The Center for Organ Recovery & Education (CORE) is one of 58 federal not-for-profit organ procurement organizations (OPOs).  The Pittsburgh-based organization connects patients with donors and provides education about the organ donation process.

 

Pennsylvania Rare Disease Legislative Scorecard

The Pennsylvania Rare Disease Legislative Scorecard lists Pennsylvania’s representatives in Congress and has a chart recording their votes on a number of bills related to the health and welfare of patients with rare diseases. The RDLA site also has links to contact information for representatives as well as ways to keep up with relevant bills that have been introduced.

 

Pennsylvania State Hospitals

The Pennsylvania Department of Human Services has a database of the contact information for each Pennsylvania State Hospital and lists which counties are served by each hospital.

Pennsylvania Health Care Containment Council  The Pennsylvania Health Care Cost Containment Council (PHC4) is an organization which addresses escalating health costs, ensuring quality health care, and increasing access to health care for Pennsylvania citizens regardless of economic stature. 

Pittsburgh Regional Health Initiative  The Pittsburgh Regional Health Initiative is an organization that works to develop and manage programs, research, training, and grant making for patients and health care workers.  Particularly useful resources include hospital-based Primary Care Resource Centers and the Perfecting Patient Care program.

Caregiver Champions  Caregiver Champions (in conjunction with the Jewish Healthcare Foundation) is an organization which helps support patients’ family members and informal caregivers by teaching them methods of care not just for their patient, but for themselves.  In particular, they include resources for identifying and reducing caregiver stress.

Pennsylvania eHealth Partnership Authority  The Pennsylvania eHealth Partnership Authority was created to improve health care delivery and outcomes in the state by enabling the secure exchange of electronic health information.  This system allows physicians and health care providers to more easily access patient information and share it with the patient’s other doctors.

Main Line Health Classes, Events, and Screenings  Main Line Health is a network of several hospital and health centers in eastern Pennsylvania.  Their website includes information about a number of classes, events, and health screenings at their participating hospitals.  Events listed can include prominent speakers in the health field as well as a number of fundraisers.

CLICK HERE to view the National Rare Disease Resource List

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RHODE ISLAND RARE DISEASE RESOURCE LIST

Resource List Compiled by: 

Patty Weltin, founder of the Rhode Island Rare Disease Foundation (RIRDF) a chapter of the Rare Disease United Foundation.

 

KIDSNET helps assure that all children in Rhode Island are as healthy as possible by getting the right health screenings and preventive care at the right time.

Early Intervention services are designed to serve children younger than three years of age who are experiencing developmental delays in one or more of the following areas: cognitive, physical, communicative, social/emotional, or adaptive development skills.

Rhode Island Parent Information Network Our mission is to assist individuals, parents, families, and children to achieve their goals for health, educational, and socioeconomic well being by providing information, education, training, support, and advocacy for person/family centered care and systems change. A Family Voices state affiliate.

About Families teams children with special health care needs and their families with experienced, licensed clinical staff and dedicated family service coordinators with the goal of creating and implementing comprehensive plans of care that address the needs of the child and the family as a whole.

The ARC of Blackstone Valley is committed to supporting people with intellectual and developmental disabilities secure the opportunity to choose and realize their goals of where and how they live, learn, work, and play.


Special Olympics Rhode Island program is one of the world’s most dynamic, providing over 1,400 year-round sports training and athletic competitions for more than 2,800 athletes and hosting over 40 local, regional, and statewide tournaments and competitions each year in 25 official and demonstration sports.

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 SOUTH CAROLINA RARE DISEASE RESOURCE LIST

Family Connection of SC
This statewide nonprofit organization links families of children with special healthcare needs and disabilities with resources, support and education.

LifeNet South Carolina 
The mission of LifeNet is to provide safe, quality air medical service and patient care to the critically ill and injured.

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SOUTH DAKOTA RARE DISEASE RESOURCE LIST

South Dakota Parent Connection

Providing support, information and resources to assist families.

 

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TENNESSEE RARE DISEASE RESOURCE LIST

 

Tennessee Disability Coalition

Providing disability information, insights, and resources.

 

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TEXAS RARE DISEASE RESOURCE LIST

Resource List Compiled by:  Jennifer McGowan   

ASC Network of Care     Transportation for medical appointments in and around San Antonio.

Camp for All is a barrier free camp for children and adults with special needs and challenging illnesses.  This non-profit is open year-round for summer camps and for retreats in the spring, fall and winter.  Their directories list special needs summer camps. 

Haleycurls for Hope Foundation 
The Haleycurls for Hope Foundation provides assistance to children receiving services at Dell Children's Medical Center Cancer and Blood Disorder program and anyone with a histiocytic disorder regardless of location.

Morgan's Wonderland  An amusement park for children with disabilities.   

San Antonio - UT Health Science Center Library  Providing information and resources about health, medicine, nutrition and related fields.

Texas DSHS - Department of State Health Services (Children with Special Healthcare Needs Services Program)    Providing information about healthcare, education, and special services for families their children with special healthcare needs.

Texas Parent to Parent
An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.

Disease-Specific Resources

AMDA (Pompe) An organization that serves the needs of Pompe patients and their families.   

Angel Karly Foundation  A site dedicated to assisting families whose children are challenged with Angelman Syndrome.

Camp Diasozo   A camp for children with morphea and scleroderma.

Carter Centers for Brain Research in Holoprosencephaly and Related Malformations

Rare Brain Disorders Program  A program at UT Southwestern, Dallas  specializing in rare brain disorders.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

 

UTAH RARE DISEASE RESOURCE LIST

 

Special Needs Resource Project (SNRP) provides a basic guide for parents of children with chronic health issues, disabilities and special needs. This site provides information and special needs resources for parents of children with special needs or disabilities.  Though focused on children ages 0-22, most of the information we offer is applicable to adults as well.

Utah Family Voices Health Information Center

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

 

Utah Rare  Utah Rare provides a collaborative partnership among patient organizations dedicated to rare disease issues, awareness, and advocacy.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

VERMONT RARE DISEASE RESOURCE LIST

Vermont Family Network (VFN) promotes better health, education, and well-being for all children and families, with a focus on children and young adults with special needs.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

VIRGINIA RARE DISEASE RESOURCE LIST

 

Family to Family Network of Virginia - Partnership for People with Disabilities

Providing disability information, insights, and resources.

Parent to Parent of VA
An affiliate of Parent to Parent USA, providing emotional & informational support for families of children who have special needs.

Virginia Garcia Memorial Health Center 
Focuses on the needs of migrant farmworkers, both through the health center and outreach programs into the migrant camps.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

 

WASHINGTON RARE DISEASE RESOURCE LIST

 

PAVE

PAVE is a parent directed organization that works with families, individuals with disabilities, professionals and community members in all walks of life and with all types of disabilities.

 

Washington State Resources for Parents of Children and Youth with Disabilities, offered by the University of Washington, lists a variety of information and a wide array of resources for parents.

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

WEST VIRGINIA RARE DISEASE RESOURCE LIST

 

West Virginia Parent Training and Information (WVPTI)

Supporting parents and families with training, resources and information.

 

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

WISCONSIN RARE DISEASE RESOURCE LIST

 

Family Voices of Wisconsin

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

 

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

WYOMING RARE DISEASE RESOURCE LIST

 

UPLIFT

As part of the Family Voices network, they aim to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

 

Wyoming Institute for Disabilities (WIND)

Providing disability information, insights, and resources.

 

CLICK HERE to view the National Rare Disease Resource List

Looking for more Resource Links for this state?  We are, too!
Please contact Linda@atypicalhus.org to submit rare disease resource links.
Coordinate a resource list for your state, we’ll post your non-profit’s logo!

 

 

 

 

This State-Specific Rare Disease Resource List is presented by 

The Atypical HUS Foundation as a public service

for patients, families, and all who deal with the diagnosis of a rare disease.

For inquiries regarding The Atypical HUS Foundation or the Rare Disease Resource List, please contact Linda Burke .

 

 Click the link below for hundreds of links providing information and resources

NATIONAL RARE DISEASE RESOURCE LIST

 National and State Resources for Families and Professionals

A Public Service sponsored by

 

 

  We support the mission and outreach of these Rare Disease organizations, and proudly partner with their rare disease awareness programs and educational resources.  The Atypical HUS Foundation  appreciates their efforts to provide information, insight, and support to rare disease patients, their families, and the medical professionals committed to providing them a high standard of care.

                                                                                

   Rare Disease Organizations in America and Beyond

 

Visit the National Organization for Rare Disorders to Learn More   

             

    Visit  Global Genes to Learn More

Visit Rare Disease United Foundation to Learn More

 Visit EURORDIS to Learn More

JOIN the CONVERSATION at RareConnect

Connecting Rare Disease Patients Globally

 Information, resources, and support are available at RareConnect, a joint partnership of EURORDIS and NORD.

                                                                   

Participate in their annual Rare Disease Awareness efforts, recognized globally each year, the last day of February.

Rare Disease Day – last day of every February

USA Resources                       European Resources

 

Special THANKS:        

 Resources for MA and RI provided by the Rare Disease United Foundation,               building a strong rare disease community throughout the United States. 

FMI visit www.rarediseaseunited.org

 

 

   Thank you to Family Voices and the  Histiocytosis Association for providing various resource links.  Special thanks to Carly Schmidt for compiling the list of Pennsylavania resources and to Jennifer McGowan for suggesting Texan resources. 

We greatly appreciate the assistance from multiple rare disease organizations, patient advocacy groups, and others whose efforts have been invaluable in providing information and resources to rare disease patients, their caregivers and their families.  THANK YOU!

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~

Looking for more Rare Disease Resources specific to your state?

We are, too!

Please contact Linda@atypicalhus.org if you can provide additional national or state resource links.  

Revised Feb. 2015

 

        

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

************************

NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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