Advocacy for Neuroacanthocytosis Patients

Advocacy for Neuroacanthocytosis Patients

Charity information

Advocacy for Neuroacanthocytosis Patients

The Advocacy is the only charity supporting patients, their families affected by neuroacanthocytosis and the medical community concerned with alleviation and the search for a cure

Founded 2002

  • Mission statement

    The Advocacy for Neuroacanthocytosis Patients was established in 2002 to support NA patients and to develop research aimed at alleviation of the disease. With donations from friends of patients, including several foundations and charitable trusts, we finance research and education for this rare disease.

    Day-to-day the Advocacy works closely with 50 neurologists and research scientists around the world to exchange and advance knowledge of the disease and to campaign for substantial research grants. Research started with Advocacy grants led in January 2010 to the announcement by a team of five European university hospitals of the award of a grant from E-RARE, an initiative of the European Union, of €650,000.

  • Aims

    Advocacy for Neuroacanthocytosis Patients aims to:

    • To advance the education of health professionals and the general public in all areas relating to neuroacanthocytosis. Education includes the learning that comes from basic and clinical research.
    • To promote and protect the physical and mental health of sufferers of neuroacanthocytosis diseases and their families around the world through provision of support, education and practical advice.
  • Overview

    Established: June 2002

    Registered Charity Number: 1133182

    Board members: 5

    Volunteers: 10

    Phone number: 020 7937 2938

    Address: 32 Launceston Place London W8 5RN

    View charity accounts on the Charity Commission website
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