Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening ... Read more
Updates
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FA Community Bonds Are Strong Even When We’re Far Apart
I remember meeting my dear friend Mary for the first time. Mary also has Friedreich’s ataxia (FA) and is the mother of four beautiful ... Read more -
Increased Thickness of Heart’s Left Ventricle, Linked to Genetic Disease Severity in Adults with FA
Increased thickness of the lower left chamber of the heart — the left ventricle — is one of the most common structural heart abnormalities ... Read more -
The Zeego Tales: A Conflicting Gift
I saw one of my middle school teachers the other day. Two decades have passed since I was in her religion class. She saw ... Read more -
Recovery Has Reframed My Priorities
I’m realizing that short-term disability insurance provides value beyond the financial benefit. Of course, the continued flow of income is important when it helps ... Read more
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Periods of Isolation Allow Me to Thrive
I have been in many social situations where I have blown it. Almost every ... -
Rare Disease Day 2020: How You Can Get Involved
Did you know that one in 20 people will live with a rare disease ... -
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 ... -
‘I’m Going to Teach You to Walk’
The sky turned pinkish and the clouds became bright blue as the Louisiana sun ... -
Hide Yourself or Reveal Yourself — the Choice Is Yours
Change seldom happens by accident or coincidence, especially when it involves other people, such ...
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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