CajunHeart - http://cajunheart.tripod.com
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. |
Friedreich Ataxia Research Association - http://www.fara.org.au/
Summarises recent progress in ataxia research and the search for better treatment. |
Friedreich's Ataxia Fact Sheet - http://www.ninds.nih.gov/disorders/friedreichs_ataxia/detail_friedreichs_ataxia.htm
A resources guide and fact sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. |
Friedreich's Ataxia Parents Group - http://www.fortnet.org/fapg/
With advice for new parents on the disease, and on how the parent might better cope emotionally. |
Friedreich's Ataxia Research Alliance - http://www.faresearchalliance.org/
Non-profit organization dedicated to the pursuit of scientific research leading to treatments and a cure. |
Friedreichs Ataxia Society Ireland - http://www.ataxia.ie/
Voluntary organisation providing support to anyone affected by genetic ataxias. Includes events calendar, membership details, and information on accessibility issues. |
GeneClinics: Friedreich Ataxia - http://www.geneclinics.org/profiles/friedreich/
An in depth look at this disorder. Includes a summary, diagnosing, molecular genetic testing, clinical description and management. |
Matt's Mansion - http://www.matthewlaw.co.uk/
Describes his life with the condition, and his travels in a wheelchair. Includes information for any disabled person considering foreign travel. |
NORD: Friedreich's Ataxia - http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Ataxia,%20Friedreich's
Offers the synonyms, a general discussion and further resources. |
Not Going Quietly - http://www.notgoingquietly.com
A personal account of diagnosis, daily life, challenges, and international travel. Includes details of treatments, and a photograph gallery. |