15 Best Ataxia Blogs & Websites in 2026

1. Action for A-T

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Description Action for A-T is a charity that was set up by two parents following their daughter being diagnosed with a rare genetic disorder called Ataxia-Telangiectasia (A-T). Raising money for medical research for Ataxia Telangiectasia (A-T) - rare, neurodegenerative, genetic disease leading to disability and premature death.MORE Email ****@actionforAT.org
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2. Ataxia UK News

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Description Ataxia UK is the national charity for everyone affected by ataxia. We have been running for over forty years. Our mission is to support people affected by ataxia with research, information, welfare grants, campaigning and the opportunity to meet and help others in the same position.MORE Email ****@ataxia.org.uk
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3. National Ataxia Foundation Blog

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Description Get Information on Ataxia, its symptoms, treatment, Ataxia research, and stories of people living with Ataxia. National Ataxia Foundation (NAF) is dedicated to improving the lives of persons affected by ataxia through support, education, and research.MORE Email ****@ataxia.org
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4. Friedreich's Ataxia News

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Description At Friedreich's Ataxia News, we strive to bring to light the latest science and research pertaining to FA so that patients and their families can access and understand it. Our editorial staff scours clinical trials.gov, PubMed, and other sources to pick up on the most recent FA studies and present their findings in a way that patients can understand.MORE Email ****@bionewsservices.com
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5. FARA Blog

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Description The Friedreich Ataxia Research Association (fara) is a not for profit organisation that supports research into treatments and a cure for Friedreich Ataxia. fara does not receive State or Commonwealth Government support and relies largely on the family and friends of Friedreich Ataxia patients and generous businesses within Australia and New Zealand to fund its research programs.MORE Email ****@fara.org.au
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6. Retrospective Lily Blog

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Description My name is Lily. I'm 25 years old. I have Friedreich's Ataxia and use a wheelchair. This section of my blog is about my disability experience.
Email ****@gmail.com
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7. Fara NZ Blog

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Description Friedreich Ataxia Research Association New Zealand (FARA NZ) is a charitable organisation set up to improve the quality of life for people diagnosed with FA, by supporting them and their families and to assist the funding of scientific research to treat this rare neurological degenerative condition.MORE Email ****@fara.org.nz
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8. Nature » Spinocerebellar Ataxia

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Description Spinocerebellar ataxia refers to a group of genetic, progressive neurodegenerative disorders of the spine and the cerebellum that can affect balance, coordination and speech. Latest news and research from Nature.com on the topic of Spinocerebellar ataxia.MORE Email ****@nature.com
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9. Friedreich's Ataxia Research Alliance

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Description FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.MORE Email ****@curefa.org
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10. Friedreich Ataxia Network

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Description We are FAN, a support- and information-sharing network for anyone impacted by Friedreich Ataxia (FA) FAers, family, carers and friends.
Email ****@fan.asn.au
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11. Friedreich Ataxia Scientific News

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Description Friedreich Ataxia and close related scientific news. Topics related to rare diseases.
Email ****@gmail.com
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12. The Life of Riley's

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Description Our journey with Friedreichs Ataxia. Our son has recently been diagnosed with Friedreichs Ataxia and Cardiomyopathy. This is an honest blog about our journey as a family.
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