Patient information – Chorea & Huntington’s disease – Adult

Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND.

Advocacy for Neuroacanthocytosis Patients

Neuroacanthocytosis (NA syndromes) refers to 2 genetic disorders (chorea-acanthocytosis and McLeod syndrome) characterised by misshapen, spiny red blood cells (acanthocytosis) and neurological abnormalities, particularly movement disorders. The onset, severity and specific physical findings vary depending upon the specific type of NA present. Symptoms include chorea (involuntary, dance-like movements), involuntary movements of the face and tongue, progressive cognitive impairment, muscle weakness, seizures and behavioural or personality changes.

The Advocacy for Neuroacanthocytosis Patients was established in 2002 to support neuroacanthocytosis patients and to develop research aimed at alleviation of the disease. In 2009 the Advocacy became a registered charity.

Our mission is to assist patients and their families and fund research into therapies, diagnostics and ultimately, a cure. The Advocacy aims to achieve this by promoting international collaboration, encourage cross fertilisation of knowledge, develop a virtual case database, contribute to ongoing partnerships and improve communication between all groups.

Patients can contact us any time on info@naadvocacy.org

OCCUPATIONAL THERAPY