Advocacy

The following resources can provide you and your patients with vital information about Friedreich’s ataxia (FA), including the latest research findings, clinical care, support groups, activities, and events

Friedreich’s Ataxia Research Alliance logo

Friedreich’s Ataxia Research Alliance (FARA)

FARA is an organization dedicated to the pursuit of research to find treatments and a cure for FA. They are committed to raising money for research, promoting public awareness about FA, and working with a whole host of professionals in order to further their mission to find treatments and a cure.

At the FARA website, you can find clinical care guidelines, family support, helpful resources, and much more. You and your patients can also learn about upcoming activities and events. Find the clinical care guidelines now or learn more about upcoming events and activities now.

For the latest research information, go to The Collaborative Clinical Research Network in Friedreich’s Ataxia (CCRN in FA)

The CCRN in FA is an international network of clinical research centers that work together to allow patients with FA to enroll and participate in research studies as well as receive clinical care. FA specialists at the CCRN have experience working with hundreds of patients with FA, can provide updates on the latest FA research, and share information on therapies currently in development.

National Ataxia Foundation logo

National Ataxia Foundation (NAF)

The NAF is an organization that is dedicated to improving the lives of people living with ataxia through support, education, and research.

NAF is the only foundation in the United States that is dedicated to finding a cure for all types of ataxia. At the NAF website, patients can join the Ataxia Patient Registry to help develop new treatments and look for a cure. Patients can discover many free publications to help stay informed on FA management topics, such as the importance of exercise and the reasons for following dietary guidelines specifically for ataxia. They can also find an ataxia clinic that’s near them. Find a clinic now.

Muscular Dystrophy Association logo

Muscular Dystrophy Association (MDA)

MDA is an organization that has been committed to improving the lives of people with muscular dystrophy and other neuromuscular diseases through innovations in science and in care. Visit the MDA website now.

The MDA website includes information about science and research, as well as resources for patients and people who want to get involved in fundraising.

There are also support groups for people living with FA

Finding emotional support is an important part of living with FA. Patients can find support groups on Facebook. They can also join the Friedreich’s Ataxia Parents’ Group, a small group of FA parents who have been coming together via email for support and information since 1997. Learn more by visiting their website.

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