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Advocacy for Neuroacanthocytosis Patients

The Advocacy for Neuroacanthocytosis Patients ("The Advocacy") works to improve the lives of patients suffering from a group of neurodegenerative diseases that are characterized by anomalies in the membranes of patients’ red blood cells and the gradual deterioration of parts of the basal ganglia that leads to severe movement disorders and often, early, unexpected death. Each of the diseases in the group seems to be monogenetic and each has a distinctly different genotype. The Advocacy is the expression of the families and friends of patients determined to seize the opportunity to:
  • Advance scientific research that explores the physiology of the patients’ neurons and the effect of the gene mutation on the eventual neuronal mal-function and apoptosis.

  • Support clinical studies of patients who are widely and thinly dispersed around the world and especially to bring together patients’ case histories in a consistent and objective format that will be available through the Internet to qualified scientists.

  • Encourage younger scientists to study these diseases.

  • Provide information and training in this disease group to the medical community around the world.

  • Support families affected by these diseases with information and communication that will empower them to take initiative in finding experienced neurologists or working with neurologists who often have never diagnosed or treated any of these conditions.