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 > | CPAG Committee Roster


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

Advancing Research and Treatment for Frontotemporal Lobar Degeneration Consortium (ARTFL) CREATE: Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium neptune logoNEPTUNE: Nephrotic Syndrome Rare Disease Clinical Research Network Rett Syndrome, MECP2 Duplications, & Rett-related Disorders Consortium
Autonomic Rare Diseases Clinical Research Consortium Developmental Synaptopathies Consortium (DSC) North American Mitochondrial Diseases Consortium STAIR: Sterol and Isoprenoid Diseases Consortium
Brain Vascular Malformation Consortium dystonia Dystonia Coalition Porphyrias Consortium Urea Cycle Disorders Consortium
Brittle Bone Disorders (BBD) Genetic Disorders of Mucociliary Clearance Consortium Primary Immune Deficiency Treatment Consortium (PIDTC) vcrc logoVasculitis Clinical Research Consortium
noneChronic Graft Versus Host Disease Consortium (cGVHD) INC logoInherited Neuropathies Consortium Rare Kidney Stone Consortium  
Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) noneLysosomal Disease Network Rare Lung Diseases Consortium