The Advocacy for Neuroacanthocytosis Patients was established in 2002 to support neuroacanthocytosis (NA) patients and to develop research aimed at alleviation of the disease.
As these syndromes are so rare that patients and 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. Since 2002 a Yahoo Group has been used by patients to ask questions, share experiences and exchange information throughout the community of subscribers. We also publish an e-newsletter, NANews, several times a year, that relates patients’ experience as well as updates on related research activity. Individual patient advocates speaking English, French, German and Spanish are actively in contact with patients or their families. We are experimenting with social networking media to find ways of building support for NA patients and research.
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