Collectively, the Coalition of Patient Advocacy Groups (CPAG) represents the perspective and interests of all patient advocacy organizations associated with the clinical research consortia. Through collaboration, patient advocacy groups and researchers can make faster progress toward new treatment options and cures, which can improve the lives of all persons and families affected by a rare disease. Learn More >

Rare Diseases Advocacy Groups
Click on a Rare Diseases Network Consortium to see corresponding advocacy groups:

or Find information on advocacy groups by entering your disease or disorder below:

Angelman, Rett, and Prader-Willi Syndromes Consortium Chronic Graft Versus Host Disease Consortium (cGVHD) NEPTUNE: Nephrotic Syndrome Rare Disease Clinical Research Network Salivary Gland Carcinomas Consortium
Autonomic Rare Diseases Clinical Research Consortium Dystonia Coalition North American Mitochondrial Diseases Consortium STAIR: Sterol and Isoprenoid Diseases Consortium
Brain Vascular Malformation Consortium Genetic Diseases of Mucociliary Clearance Consortium Porphyrias Consortium Urea Cycle Disorders Consortium
Consortium for Clinical Investigation of Neurological Channelopathies Inherited Neuropathies Consortium Primary Immune Deficiency Treatment Consortium (PIDTC) Vasculitis Clinical Research Consortium
Spinocerebellar Ataxia - Clinical Research Consortium Lysosomal Disease Network Rare Kidney Stone Consortium