The Atypical HUS Foundation

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.     

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