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Welcome to Virtual Neuroacanthocytosis, a submodule of the European Huntington´s Disease Network (EHDN) In cooperation with EHDN, this platform is dedicated to the neuroacanthocytosis syndromes and provides sources of information for patients, relatives and physicians on how to cope with these diseases. Furthermore, international physicians can use this platform to enter pseudonymized data on their neuroacanthocytosis patients. As these diseases are extremely rare every contribution counts to increase our knowledge about diagnostics, the clinical syndrome, and therapeutic strategies. The knowledge and the tools kindly granted by EHDN are a great help to build a worldwide case register and help international researchers advance their projects. Understanding the disease is crucial for all efforts to develop therapies, and is greatly facilitated by this opportunity for international collaboration. Fourth International Symposium on Neuroacanthocytosis  | Picture taken at Queen Square, London |   |
Picture taken at Queen Square, London (heads from left to right):
Eric Moses; Susanne Schneider; Benedikt Bader; patient relative; Lars Timmermann; Jean Delaunay; patient relative; Narla Mohandas; Matthias Horstink; patient relative; Lucia de Franceschi; patient; Giel Bosman; Rainer Prohaska; Adrian Danek; Ginger Irvine; Alexander Storch; Hans H. Jung; Edmund Critchley; Akira Sano; Larry Klobutcher (hidden); Ruth Walker (hidden); Sonia Gupta; Masayuki Nakamura; Mark Walterfang; Kailash Bhatia; local researcher; Richard Hardie; Tony Hannan; Linda Taib; Antonio Velayos-Baeza; local researcher; Clotilde Levecque; Jaqueline McIntosh; Niall Quinn; Laura Cif; Ludvic Zrinzo; Marwan Hariz; Pierre Burbaud; Tom Foltynie; Irene Martinez-Torres; Bernhard Landwehrmeyer; Martin Rakusa; Ali Alsanousi; Sonia Gandhi; Andreja Avbersek; Penny Hogarth; Glenn Irvine; Susan Hayflick; Bob Fuller.
Participants not on the image: John Hardy; Tony Monaco; Christian Vollmar.
Neuroacanthocytosis Syndromes II
The second volume of Neuroacanthocytosis Syndromes was published in December 2007. Edited by Ruth H. Walker, Shinji Saiki and Adrian Danek, the book provides a profound insight into recent developments within the field of neuroacanthocytosis syndromes.
Click here for more information at amazon.com.
Diagnostic of chorea-acanthocytosis
A Western blot test for the presence of chorein in the membranes of red blood cells can be offered free of charge due to support of the Advocacy for Neuroacanthocytosis Patients'.
Download instructions on the blood sampling and the shippment of specimen: PDF
More information of the method: PubMed Link
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