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Advocacy for Neuroacanthocytosis Patients

Charity description

Advocacy for Neuroacanthocytosis Patients logo
Neuroacanthocytosis devastates the lives of young adults with a severe and very rare movement disorders similar to Huntington's and Parkinson's diseases - We are the only group in the world that helps bring patients together and promote scientific research.

Since 2002 the Advocacy has helped people with
neuroacanthocytosis and their families share information and find medical support for these very difficult diseases. As there may be only 350 diagnosed cases on earth, we operate world-wide. With donations
from friends of patients including several foundations and charitable trusts, we
finance research and education of the doctors and scientists who are working to
understand and eventually find a way to alleviate the disease. Seed money we
supplied started research that made possible a grant of Euros 650,000 from
E-RARE, an initiative of the European Union.

Charity No: 1133182

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Website
http://www.naadvocacy.org

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