The neuroacanthocytosis diseases are so rare and so widely scattered that only in a collaborative “virtual” institute can clinicians and researchers around the world share their experiences of case histories and the outcomes of disease management.
This site provides quick links to the clinical support services supported by the Advocacy including:
Details of the free Diagnostic Testing available for ChAc, MLS and HD like2 through Ludwig Maxmillians Universitaet, Munich
International registry of neuroacanthocytosis cases available to professionals for patients entry and clinical research and Clinical summaries of Chorea-acanthocytosis, McLeod syndrome and Huntington’s disease-like 2
An important clinical review is by Ruth Walker: The Differential Diagnosis of Chorea
The Advocacy has funded over ten research projects worldwide since its beginning in 2002. Current research projects include work supported by the Advocacy as well as news of the European Multidisciplinary Investigation into Neuroacanthocytposis (EMINA)
The Advocacy's research objectives, values, decision making process and the application form for grants are described.