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Welcome to the Advocacy for Neuroacanthocytosis

Drs. Ruth Walker, Adrian Danek and Hans Jung, Champions of the Advocacy
London Craft Fair fundraiser for NA
NA Symposia Reports
Music Workshop at Dresden Symposium 2018
RAREfest 2018
Poster session Kyoto Symposium 2006
Fundraising plant sale Edinburgh 2012
First patients/families/ carers meeting May 2016
Bethesda Symposium 2010 Doctors and Researchers
Patients, Families and Caregivers (Ann Arbor 2016)
Patients, Families and Caregivers (Ann Arbor 2016)

The Work of the NA Advocacy 

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 through RareConnect.org by going to Our PatientsThe 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, Polish and Spanish are actively in contact with patients and/or their families. Volunteers with varied skills including 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 University of Munich chairs the Advocacy Board of Fellows. Ginger Irvine manages the day to day affairs of the Advocacy.