Refsum Disease

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Rafsum Disease:  Patient UK

Refsum Disease factsheet: National Institute for Neurological Disorders and Stroke (US site)
 
 Support Groups
Climb - The National Information Centre for metabolic Diseases
(see website for contact details)
A national umbrella organisation working on behalf of children, young people and families affected by metabolic disease. Offers a telephone helpline for information, counselling and support; written information by post (detailed information only available following confirmed diagnosis, appropriate professional counselling and telephone contact); details of other agencies and sources of help; information about the latest research and whom to contact for specialist advice etc.



 

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