Presenting the 61st Annual Ataxia Conference (AAC) "Fighting for Freedom" Attendees have a lot of reasons to be excited about this year's AAC. There are multiple promising treatments in trials…
Anna Gordon from West Virginia doesn't let her Friedreich ataxia define her, and she encourages anyone with a rare disease to not let it define them either, reported Public Broadcasting.…
When Raeno Brendtro was asked to sit down after her diagnosis, she refused. She needed to stand for as long as she could, now that her time was limited. The…
If you or someone you love have Friedreich's Ataxia, you know how badly we need an adequate treatment. Friedreich's Ataxia (FA) is a rare disorder, which results in neurological and…
Happy Memorial Day Weekend Patient Worthians! This week we have an inspiring interview with the CEO and Founder of the Hereditary Neuropathy Foundation. We also have a motivating story on a cheerleader battling Friedreich's…
Leah Alstin has a rare disease called Friedreich’s ataxia. Friedreich’s ataxia is a disease that progressively damages and affects the nervous system. Poor coordination is one of the early symptoms…
Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…
Friedreich's ataxia (FA) is a rare and painful disease. With few treatments available to treat the genetic mutation, most therapy is aimed at controlling symptoms. Clearly, these short-term band-aids aren't…
Whenever we’re struggling with something, we assume we are alone. We feel like we are the only ones. But in September of 1997, a small group of Friedreich’s ataxia (FA)…
"Success largely depends on two factors. Number one is each individual person's decision to take action. Number two is our interaction with each other and support of each other in…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
