Welcome to the Advocacy for Neuroacanthocytosis Patients (NA Advocacy)
Neuroacanthocytosis (NA) is an ultra rare neurological syndrome that causes the diseases chorea-acanthocytosis (VPS13 Disease) and McLeod Syndrome (XK Disease). The Advocacy for Neuroacanthocytosis Patients was established in 2002 to support patients and to fund research into therapies, diagnostics and ultimately, a cure. In 2009 the Advocacy became a registered charity in England and Wales.
The Advocacy aims to promote international collaboration, encourage cross fertilisation of knowledge, maintain a virtual case database, contribute to ongoing partnerships and improve communication between all groups.
We are committed to supporting patients, their families and carers. Given the small number of patients, support tends to be of a personal nature and is primarily offered in the form of private messaging, telephone calls and email correspondence.
As NA diseases are ultra-rare, patients and families frequently feel isolated and eager to communicate with others who have an understanding of the traumatic experience of being diagnosed with this devastating condition. Via the Advocacy’s website and the Advocacy’s communities on social network platforms, patients can ask questions, share experiences and exchange information with each other. The Advocacy also publishes an e-newsletter, NA News, several times a year. The newsletter relates patients’ experiences and provides updates on research activity.
The Advocacy does not offer medical advice. Patients and their caregivers are referred to their physicians to discuss their individual care and therapies.
NA is so rare that pharmaceutical companies see little potential commercial value in supporting basic research into the conditions. An important part of our campaign is to encourage academic inquiry into the unique clues that NA offers in the search for the causes of neurodegeneration. This may lead to discoveries important for progress with treatments for Parkinson’s and Huntington’s diseases as well as NA.
The research forums are open to patients and families and regularly include Q and A sessions, offering participants the opportunity to engage directly with the leading scholars in the field and inquire about research progress.
The Advocacy has financially supported over twenty research projects and the publication of two textbooks on the disease group since our inception in 2002.
Our logo consists of an ideogram, known as a kanji in Japanese, superimposed on the representation of a thorny red blood cell (acanthocyte). The kanji was designed by Teiko Dewa, a Japanese artist living in New York City. The kanji incorporates the symbol for “star” to convey the meaning of hope.