VIDEO - Rare Disease Challenges
Rare Disease Challenges: Support for Patients & Families
A Video offering Insight and Support for those affected by a
Rare Disease diagnosis or Chronic Illness
Click HERE to watch this video directly on YouTube.
Featuring Jody L. Jones, Ph.D., Clinical Psychologist
University of Iowa
Click for the Rare Disease Challenges Video Index
Complete with QR Code to watch Rare Disease Challenges: Support for Patients & Families on your SmartPhone, tablet, or other device - GREAT to share with family or friends, as well as to distribute at meetings!
Designed to accompany the video, this list offers a single page of print-ready, comprehensive information: a QR Code for Rare Disease Challenges: Support of Patients & Families, a link to the full Resource List for the film, and an index of categories presented within the Resource List.
Click here to view the full Resource List for the video, with links, information, helpful tips, and support to address personal, family, and lifestyle challenges.
Looking for further information on the challenges of living with a rare disease or wanting to learn more about how to offer support to a patient and their family? We've gathered valuable articles, links, and tips to offer insight and information. Categories include:
Caregiver - Advocacy and Support
Coping with Social and Emotional Issues
Patient Assistance Programs
Tools - Organizational Management
Patient & Family Assistance Tips
and MORE
SONG: A Rare One by Tricky Britches
Music and Lyrics
Tricky Britches’ guitarist Jed Bresette, inspired by one family’s struggles, created the song "A Rare One" to highlight the life challenges that face rare disease patients. A Rare One serves as an honest declaration of strength in the face of adversity, and the commitment a future illuminated by the shining light of hope.
It's a mighty heavy load - Sometimes it's hard to stay afloat, but
You can always count on me to help you through the stormy seas, and
When you feel like breaking down and giving up,
just look around and
You will find many people who are just like me -
They're just like you
“….and I just want you to know, you are not alone.”
Lyrics for A Rare One are available 3 language, by clicking below for
Lyrics for A Rare One in English,
Lyrics for A Rare One in French,
and Lyrics for A Rare One in Spanish
A Rare One by Tricky Britches- (created especially for the Rare Disease community) download the vocal version or an instrumental version of A Rare One at CD Baby.
Tricky Britches generously is donating 20% of profits from their CD Baby music downloads of "A Rare One" to 5 non-profits that serve rare disease patients.
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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© 2017 Created by Deborah Lewis.
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