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.

Researchers at the University of Munich Neurology Department receive funding by the E-RARE-Programme of the European Commission (ERA-Net)

A three-year research grant has been awarded to Prof. Dr. Adrian Danek and Dr. Benedikt Bader of the Ludwig-Maximilians-Universität Munich, Department of Neurology,  and their collaborators.  The grant, valued at around €650,000 , was won with the support of the Bayerische Forschungsallianz (Bavarian Research Alliance, specifically with the help of Dr. Florence Gauzy and Dr. Panteleimon Panagiotou) and is allocated in connection with the E-RARE Programme of the European Commission.
The project name is EMINA (European Multidisciplinary Initiative on Neuroacanthocytosis).  From mid-2010, six partner organisations in Germany, Austria, the Netherlands, France and Turkey will be linked to each other in a network, in order to use their combined expertise to take a significant step forward in both basic research and applied clinical research into  the neuroacanthocytosis syndromes. These syndromes are a group of rare neurological illnesses, which affect mostly young adults of approximately 20 to 40 years of age. Severe neurological and psychiatric symptoms that include movement disorders, swallowing and speaking problems, epileptic seizures and obsessive-compulsive behavior are characteristic of these diseases. Since 2005, there has been a unique facility in Munich that offers physicians internationally the opportunity to discuss suspected neuroacanthocytosis cases and request a diagnostic blood test for the most common syndrome in the group. In cooperation with the Neuropathology and Prion Research Centre of the Universty of Munich (Prof. Dr. Hans A. Kretzschmar) and with the  support of the Advocacy for Neuroacanthocytosis Patients (Ginger and Glenn Irvine), this test is offered free of charge to the submitting physician.
”Our intensive preliminary work over the last few years has brought us to a decisive point in neuroacanthocytosis research, and hitherto existing options did not allow us to progress further. Support for EMINA now enables us to extend our knowledge considerably, and these findings will have a direct effect on deepening our understanding and on the treatment of the neuroacanthocytosis syndromes,“ says Prof. Adrian Danek. “Furthermore, we expect the EMINA project to also influence research into the mechanisms involved in other neurodegenerative disorders such as, for example, Huntington’s disease. Thus the EMINA project will bring long-term benefits, as the insights gained can also be used to develop new therapy options for a larger group of patients, not only sufferers of the rare neuroacanthocytosis syndromes.”

Fifth International Symposium on Neuroacanthocytosis

The 2009 symposium will take place October 1st-2nd, 2010 in Bethesda, USA. Please find information on the agenda and venue here.

Neuroacanthocytosis Syndromes II

Diagnostic of chorea-acanthocytosis