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1. |
CajunHeart
NEW!
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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.
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2. |
GeneClinics: Friedreich Ataxia
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An in depth look at this disorder. Includes a summary, diagnosing, molecular genetic testing, clinical description and management.
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3. |
Friedreich Ataxia Research Association
NEW!
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Summarises recent progress in ataxia research and the search for better treatment.
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4. |
Friedreich's Ataxia and I
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The author was diagnosed with Friedreich's Ataxia when eight years old. Read about the trials and triumphs.
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5. |
Friedreich's Ataxia Fact Sheet
NEW!
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A comprehensive resources guide and fact sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
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6. |
Friedreich's Ataxia Parents Group
NEW!
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With advice for new parents on the the disease, and on how the parent might better cope emotionally.
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7. |
Friedreich's Ataxia Research Alliance
NEW!
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Non-profit organization dedicated to the pursuit of scientific research leading to treatments and a cure.
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8. |
Friedreichs Ataxia Society Ireland
NEW!
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Voluntary organisation providing support to anyone affected by genetic ataxias. Includes events calendar, membership details, and information on accessibility issues.
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9. |
Matt's Mansion
NEW!
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Describes his life with the condition, and his travels in a wheelchair. Includes information for any disabled person considering foreign travel.
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10. |
NORD: Friedreich's Ataxia
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Offers the synonyms, a general discussion and further resources.
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11. |
Not Going Quietly
NEW!
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Comprehensive personal account of diagnosis, daily life, challenges, and international travel. Includes details of treatments, and a photograph gallery.
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12. |
Patient loses right-to-food fight
NEW!
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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.
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13. |
Swiss Association of Friedreich Ataxia
NEW!
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Parents and friends of patients campaigning for better treatment for ataxics in Switzerland; also sharing news and information about the condition and current research.
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