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 diseases are so rare, 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. Patients can ask questions, share experiences and exchange information throughout the community of subscribers by going to Our Patients.
The Advocacy also publishes an e-newsletter, NANews, several times a year, that relates patients’ experiences and updates related research activity. Individual patient advocates speaking English, French, German and Spanish are actively in contact with patients 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. Please contact Ginger if you wish to participate. Prof. Adrian Danek of Ludwig-Maxmilian’s Universitaet, Munich, chairs the Advocacy Board of Fellows. Ginger Irvine manages the day to day affairs of the Advocacy.