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Supporters globally are gearing up for International Ataxia Awareness Day, observed annually on Sept. 25 to raise the profile of a group of progressive neurological disorders that includes Friedreich’s ataxia (FA). Patients, caregivers, and supporters will share stories on social media, advocate on behalf of the ataxia community,…
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A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…
In addition to three recruiting clinical studies that were announced in June, an additional trial is seeking participants with Friedreich’s ataxia (FA) to investigate how the disease affects the brain, spinal cord, and cognition. Listed in a monthly newsletter released by the Friedreich’s Ataxia Research Alliance (FARA),…
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
When a fall leaves columnist Kendall Harvey with a fractured foot, she takes the time to reflect on her eventual transition to a wheelchair.
Visit the Friedreich’s Ataxia News forums to connect with others in the FA community.
Click the link below to find all the latest news related to Friedreich’s ataxia.
Becoming educated and informed about FA is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your FA journey.
There is no cure for FA yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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