Patient Associations

These groups typically focus primarily on one specific disease or type of disease process (e.g. inborn errors of metabolism, muscle disease, glycogen storage diseases, autoimmune diseases). Occasionally, they may serve as umbrella organizations for larger numbers of rare diseases, in order to achieve a critical mass required for advocacy purposes, e.g. National Organization of Rare Disorders (NORD) in the USA. Their motives include anything that may stimulate the discovery and development of new treatments for their diseases of interest. Another important function of many of these groups is to provide patient information to their members, and often also to the public.

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