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Education

NAF Honors Community Members for Their Achievements

Each year on the final night of the Annual Ataxia Conference we honor members of the Ataxia community for truly standing out in the field of Ataxia research or awareness. We want to congratulate this year’s awardees and thank them for their dedication and achievements to the Ataxia community!  Check Read More…

FDA Approves First Treatment for Friedreich’s Ataxia

The FDA recently the FDA announced approval for SKYCLARYS (omaveloxolone) for the treatment of Friedreich’s Ataxia. This is the first and only FDA-approved prescription medicine for Friedreich’s Ataxia. NAF is thrilled about this announcement and proud to have been involved in the process, from clinical trial recruitment to educating our community about Read More…

Advancing Research by Joining the CoRDS Patient Registry

The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment.  CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…

NAF Announces New Ataxia Centers of Excellence Program

In our continued commitment to improving clinical care and accelerating treatment development, we’re proud to announce NAF’s new Ataxia Centers of Excellence (ACE) designation! The ACE program will recognize exceptional centers providing comprehensive care and services for individuals affected by Ataxia and their families. In addition to providing expert clinical Read More…

The Difference Between Observational and Interventional Studies

There are two main categories of human clinical trials: (1) observational studies, and 2) interventional studies. Both types of clinical studies are essential to developing new therapies for rare diseases like Ataxia. There are multiple trials taking place right now for Ataxia. In this PrepRARE article, learn a little more Read More…

All About Cerebral Spinal Fluid (CSF) Donation

DISCLAIMER: The information provided in this article is for informational use only. NAF encourages all readers to consult with their primary care provider, neurologist, or other healthcare provider about any advice mentioned. Deciding whether to donate cerebral spinal fluid (CSF) is a very personal, but impactful decision. In the video Read More…

What Should I Consider Before Getting Genetic Testing?

Will My Genetic Test Results Have Implications for Family Members? There are many things to consider before having genetic testing done. Here are a few common questions to ask yourself, if you are considering genetic testing for Ataxia. Am I the best person to be tested first in my family? Read More…

What is the Typical Process of Getting Post-Test Genetic Counseling?

What is the Typical Process of Getting Post-Test Genetic Counseling? When your results are back, your genetic counselor will contact you to review them over the phone, via telemedicine, or in-person. You are encouraged to ask clarifying questions to make sure you understand your results fully. Your genetic counselor will Read More…

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