Advocacy for Neuroacanthocytosis Patients was established in 2002 to support people living with neuroacanthocytosis (NA) and to develop research aimed at alleviation of the condition.
As these conditions are so rare, those affected and their families frequently feel isolated and are desperate to communicate with others who have an understanding of the traumatic experience of being diagnosed with this devastating condition. Patients can ask questions, share experiences and exchange information throughout the community of subscribers.
The Advocacy publishes an e-newsletter, NANews, several times a year, that relates experiences from the community and updates related research activity. Individual advocates speaking English, French, German and Spanish are actively in contact with others living with the condition and/or their families. Volunteers with varied skills from translation, bookkeeping, marketing and working with social networking media are contributing to find ways of building support for NA patients and research.