Introducing ‘No Good Excuse,’ a New Friedreich’s Ataxia Column
I’m convinced that we all think we’re unique in the following regard: Something about who we are, or our circumstances, excuses us from being better ... Read more
Updates
-
-
Why I Believe Adaptive Fitness Is Important
This week, I wanted to do something a little different. As an FA patient diagnosed only four years ago and with no sign of ... Read more -
How I Stay Active in Each Season of the Year
Daylight saving time happened last weekend, and the changing of the clocks heralded in longer days and warmer weather. I am eagerly anticipating the ... Read more -
Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as ... Read more -
Phase 2 Trial of Potential Oral Therapy, MIN-102, Starting in Spain
Minoryx Therapeutics announced it will soon launch a Phase 2 trial in Spain to evaluate its lead therapeutic candidate, MIN-102, in patients with Friedreich’s ... Read more
-
Decompressing from Life’s Complexities on a Lazy Sunday
I look forward to lazy Sundays. Nothing feels more familiar, more like my ... -
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn ... -
Using Both a Walker and a Wheelchair
“Weren’t you just in a wheelchair? Why are you using a walker now? Are ... -
How to Plan a Grassroots FA Event
Rare Disease Day was observed on Feb. 28. However, we don’t have to limit ... -
What Fundraising Means to Me
I’ve always been fascinated by stories featuring people who confront adversity by fighting against ... -
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
Rare diseases affect about 30 million Americans — roughly the same number as those ...
Subscribe to our mailing list
Get regular updates delivered to your email box.
Thanks! Please check your email for a confirmation email.
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