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GeneClinics: Friedreich Ataxia
An in depth look at this disorder. Includes a summary, diagnosing, molecular genetic testing, clinical description and management.
www.geneclinics.org
Kim Bourg describes her life with the condition, and suggests strategies for coping with it in oneself or others. Includes details of symptoms and diagnosis.
cajunheart.tripod.com
Offers the synonyms, a general discussion and further resources.
www.rarediseases.org
The author was diagnosed with Friedreich's Ataxia when eight years old. Read about the trials and triumphs.
www.ohbother.co.uk
Swiss Association of Friedreich Ataxia
Parents and friends of patients campaigning for better treatment for ataxics in Switzerland; also sharing news and information about the condition and current research.
www.achaf.org
Patient loses right-to-food fight
The BBC reports that a man with Friedreich's ataxia has lost the last stage of his legal fight to insist on his being fed artificially in the final stages of his life.
news.bbc.co.uk
Friedreich Ataxia Research Association
Summarises recent progress in ataxia research and the search for better treatment.
www.fara.org.au
Friedreichs Ataxia Society Ireland
Voluntary organisation providing support to anyone affected by genetic ataxias. Includes events calendar, membership details, and information on accessibility issues.
www.ataxia.ie
Friedreich's Ataxia Research Alliance
Non-profit organization dedicated to the pursuit of scientific research leading to treatments and a cure.
www.faresearchalliance.org
Friedreich's Ataxia Parents Group
With advice for new parents on the disease, and on how the parent might better cope emotionally.
www.fortnet.org
Friedreich's Ataxia Fact Sheet
A comprehensive resources guide and fact sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
www.ninds.nih.gov
Describes his life with the condition, and his travels in a wheelchair. Includes information for any disabled person considering foreign travel.
www.matthewlaw.co.uk
Comprehensive personal account of diagnosis, daily life, challenges, and international travel. Includes details of treatments, and a photograph gallery.
www.notgoingquietly.com