The Atypical HUS Foundation

aHUS Materials-SUMMARY

 

 

 

 

 

The Atypical HUS Foundation has created informational materials specifically designed to provide insight into atypical hemolytic uremic syndrome.  Materials are are provided in multiple formats to address a variety of needs.

 

MEDICAL Overview:  NIH GeneReview for aHUS

Heavy on medical facts and rich with resources to delve into, the National Institutes of Health GeneReview compiles the most comprehensive, updated info related to atypical HUS.  Scientific categories range from disease characteristics and factor mutations to disease management and genetic testing.

 

Disease Overview for Families:  aHUS Bootcamp

Living with Atypical HUS -  Our aHUS Bootcamp offers specific information and outlines concerns that challenge aHUS patients and their families.  A practical overview, the aHUS Bootcamp is especially helpful for families, parents, or newly diagnosed adult patients.

Available in 3 languages:

aHUS Bootcamp (in English)

A Diagnosis of Atypical HUS Now What?  by Cheryl Biermann, Linda Burke, and Jodi Kayler

 aHUS Bootcamp (en Espanol

Un diagnóstico de SHU Atípico, ¿y ahora qué hacemos?

aHUS Bootcamp (en Francais

Un Diagnostic de SHU Atypiques – Maintenant Ce Que ? Traduction de l’original anglais de courtoisie Nicolas Mullier, L’AIRG France

 

 

 

aHUS for Clinicians

Are you a medical professional looking for a quick way to review our website for helpful information?  With links to research, videos available on our aHUS clinical channel, and MORE, our tab aHUS for Clinicians also offers opportunities for email or phone consultation with aHUS expert physicians via our 'Doc to Doc Directory' of volunteers. 

The aHUS Clincial Channel  (YouTube) offers videos packed with a wealth of solid scientific information about atypical HUS.    Top researchers and clinicians in the USA and the UK present topics such as diagnosis and treatment of aHUS, genetics, the role of complement, and more.

Rare Disease Challenges:  Support for Patients & Families     VIDEO:  Featuring Jody L. Jones, Ph.D., Clinical Psychologist  (University of Iowa, Transplant Program)

A chronic illness or rare disease diagnosis affects all individuals and groups associated with the patient. Managing medical aspects may impact family dynamics, personal relationships, professional or work areas, and other interactions across all facets of everyday life.

The video’s Resource List provides links to organizations and resources that offer assistance to those challenged with rare disease issues and concerns. Our Patient & Family Assistance Tips suggest ideas for friends, relatives, coworkers, or community members to offer support.

Printable Page –Video QR code with Resource List Link.  Distribute to friends, families, or at events.   

 

Genetic Testing

BloodCenter of Wisconsin -BCW

Cincinnati Children's -CCHMC

MORL - University of Iowa

Machaon Diagnostics - California

 

 

 

ATYPICAL HUS BROCHURE - Available in 2 languages

DOWNLOADS in English and in Spanish

 

Atypical HUS BROCHURE--STORIES OF HOPE (ENGLISH)

 

Atypical HUS BROCHURE--STORIES OF HOPE (ESPANOL)

 

For individuals or organizations wishing to order the Foundation’s brochure, “A Story of Hope” (English or Spanish versions) the Digital Lizard link at   http://www.digitallizardprint.com/dlp/UserContentStart.aspx?category=87  will bring you to an order page that offers both language versions in increments of 50 copies. (Please have your personal or organization’s credit card ready to complete your purchase order.) 

Questions?  Contact:  Britnea Martin | Digital Lizard | 866-494-6155 ext. 108 | britnea@digitallizard.com

 

Key Resources & Info Sheet

Here's a great overview of select information and resources to begin exploring key aHUS topics.  Created as a helpful starting place for those just starting to learn about this rare disease.

 

One Page  aHUS FLYER

Looking for a single sheet that provides a quick overview of this ultra-rare disease?  Want to distribute an information sheet at your fundraising event?   The aHUS flyer is the document to provide insight to extended family, co-workers, school personnel, or others who wish specific details in a clear, concise format. 

 

 

aHUS FLYER--1 page Summary (ENGLISH-For online viewing)

aHUS FLYER--1 page Summary (ENGLISH- PRINTER FRIENDLY)

aHUS FLYER--1 page Summary (ESPANOL) 

 

Business Cards

Please click here for a PDF file of the aHUS Calling Cards (Business Cards) that can be used to help guide others to the Atypical HUS website and the aHUS
Foundation
to share information and raise awareness.  Distribute to family, friends, potential donors and medical professionals or use to create aHUS awareness at events.

 

 

RESOURCES:  Rare Disease Resource List

Explore Hundreds of Resource Links  to Inform and Support Patients, Families, and Professionals - Some State Listings as well - compiled by categories such as:

 Caregivers Advocacy and Support,, Patient Assistance Programs, Age Specific Resources, Social Security/Disability, Genetics, Therapy Organizations, and More

 

 

 

GRAB N GO TOOL KIT

The GRAB N GO TOOL KIT contains Practical Tools to Support Patients, Families, and Professionals 

 

LabTracker  Track lab trends to monitor patient health.  A handy trifold for patients or caregivers to keep with them, the LabTracker provides an organized format to record your lab results and other important health data. 

 

Patient Self-Advocacy Tool  Take charge of your health!  Our Patient Self-Advocacy Tool provides an organized format to list concerns, issues, and questions that arise at home between visits to your health professionals.  Great for adult patients or those caring for a patient with chronic illness, this trifold is ideal to fill in at home and bring to your next visit to the clinic, hospital, or doctor.   

 

Urgent Care Directives  Be proactive!  Fill in our Urgent Care Directives bifold with vital information concerning your medical needs.  This simple form is great to provide your employer or your child's nurse, outlining actions needed for first responders in case of medical emergencies.

A multi-purpose tool, it's perfect to take with you when traveling away from home. The Urgent Care Directives form states your rare disease diagnosis, provides details regarding specialized care necessary, and offers contact information for your specialists and Primary Care Physician. 

NOTE:  The Urgent Care Directives bifold is also handy to provide to physicians 'covering' for your regular doctor over the weekend or during times when your regular doctor is at conferences or on vacation.

 

Emergency Care Card 

A specialized Emergency Card just for aHUS patients and their medical needs.  Who speaks for the aHUS patient when accident or injury occurs?  Don't leave anything to chance, fill the information void by providing vital information necessary for emergency treatment that is rapid and appropriate for aHUS patient needs. 

A smaller format, easily portable version of the Urgent Care Directives bifold, this emergency card outlines your specialized care, contact information for your personal emergency contacts, and contact information for the Patient's Medical Team.

Make certain that your wallet, backpack or laptop case contains the Emergency Care Card.

 

 

ADULTS with atypical HUS

Adults can be diagnosed with atypical HUS, too!  Adult patients face special challenges such as workplace issues, childcare concerns, and family dynamics concernsin addition to the usual rigors of treatment that are shared across all ages and demographics.    Who advocates for the adult aHUS patient when illness strikes?

 To emphasize the special needs and concerns of the aHUS community, our

 Adults with aHUS tab provides information specific to adult aHUS patients.  Connect with other adult aHUS patients in their Forum, read blogs from adult aHUS patients, and MORE!

 

 

Education and the aHUS Patient

Help for aHUS children and young adults  to optimize their school success.  Does your aHUS child have an I.H.P. in place, with an I.E.P and  a 504 plan?  Information and resource links to maximize this year’s school experience.  Are you an adult at college or involved with learning opportunities provided by your workplace?  Adults with a chronic illness often deal with learning disabilities that can affect workplace issues.  FMI see http://atypicalhus.ning.com/page/education-and-ahus 

 

 

 aHUS VIDEOs

 

 

Check out our aHUS Clinical Channel - videos packed with a wealth of solid scientific information about atypical HUS.    Top researchers and clinicians in the USA and the UK present topics such as identification of aHUS, genetics, and the role of complement  at http://www.youtube.com/user/aHUSclinical

                                          

 

 

 

 2011 aHUS Conference - the University of Iowa

Clinicians and researchers present information from the 2011 aHUS Family Conference at the University of Iowa.

*  Dr Carla Nester's topic:  Definition of aHUS, Diagnosing aHUS, Overview of Complement    

View  Dr. Nester's presentation  (length approx. 27 mins)

 

*  Dr. Christie Thomas' topic:  Treatment of atypical HUS:  Plasmatherapy, Eculizumab (Soliris), Options for ESRD, Transplants, Data from published studies/reports   (length approx. 33 mins)

View  Dr. Thomas' presentation   (length approx. 33 mins)

 

*  Dr. Richard Smith's topic:  Atypical HUS, Genetics, and the Complement Cascade 

Vie Dr. Smith's presentation   (length approx. 32 mins)

 

 

aHUS Video Clip Library, from the 2011 aHUS Conference - the University of Iowa

Culled from the full presentations, these topic-specific video clips less than 5 minutes capture clinicians and researchers as they present information at the 2011 aHUS Family Conference at the University of Iowa.

The index features such headings as 'Diagnosing aHUS' and 'aHUS and Genetics' in addition to a variety of clips dealing with treatment options.

Click below to access links to dozens of topic-specific video clips.

click here to download the Microsoft Word document

click here to download the PDF document

 

 

Patient & Family Videos

Videos and slideshows created by aHUS patients and their families. 

Click HERE  to view Patient & Family Videos and Slideshows

 

 

 

RARE DISEASE DAY is recognized globally on the last day of February each year.   Learn more at www.rarediseaseday.org or www.rarediseaseday.us

 

WATCH these video messages, created especially for Rare Disease Day by patients and their families.

 

Join the aHUS global community at RareConnect, a joint initiative of NORD and EURORDIS.   This disease-specific website connect aHUS patients and families with information, support, and rare disease advocacy.  Keep current with new research, conferences, articles, and insights - keep in touch with others across the globe, translations in 5 languages. 

 

 

JOIN US  on FACEBOOK             FOLLOW Us on TWITTER

  

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.

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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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