The Hopes and Risks of Starting a Friedreich’s Ataxia Clinical Trial
When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment ... Read more
Updates
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Iron-induced Cell Death May Play Key Role in FA, Study Suggests
Iron-induced cell death may contribute to the progression of Friedreich’s ataxia, a study in human and mice cells shows. Inhibition of this degenerative mechanism ... Read more -
Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions ... Read more -
The Anchor on My Wheelchair from My Steadfast FA Friend
A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down ... Read more -
When in Doubt About Social Media Content, Just Be Honest
Almost every day, I have a conversation with myself about the level of my own vulnerability on the internet. Is this comment too much? ... Read more
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The Power Behind the FARA Patient Registry
Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients ... -
Neurocrine, Voyager Collaborating on VY-FXN01 Gene Therapy for Friedreich’s Ataxia
Neurocrine Biosciences and Voyager Therapeutics have formed an alliance in hopes of bringing potentially ... -
When Life Hands You Lemons
“Life isn’t fair.” “No one said this would be easy.” We have all heard ... -
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The Cure to Being Burdened by Shopping for Food
I used to enjoy going to the grocery store. I loved picking out items, ... -
FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases
The U.S. Food and Drug Administration(FDA) is updating its 2015 draft guidelines for drug ...
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Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports
News
Many Friedreich’s ataxia patients experience urinary tract symptoms, bowel problems, and sexual dysfunction, which leads to a lower quality of life, research shows. The study, “Urinary, bowel and sexual symptoms in a cohort of patients with Friedreich’s ataxia,” was ... Read more