The role of the Coalition of Patient Advocacy Groups (CPAG) Steering Committee is to help facilitate the development of activities that will benefit the entire CPAG membership. Those activities include (but are not limited to) webinars, in-person meetings, and one-on-one connections with other CPAG members and RDCRN researchers.
CPAG Steering Committee members make a commitment to attend monthly one-hour teleconference meetings and to participate collaboratively with other members on projects identified to help accelerate research as outlined in the CPAG vision and mission statements. In addition, CPAG Steering Committee members disseminate information and decisions from the CPAG Steering Committee meetings to PIs and other individual consortium PAG members in a timely manner.
Patient Advocacy Group Representatives
ACT
Advancing Craniosynostosis Treatment Rare Diseases Consortium
BORN A HERO
Representative
Carolina Sommer
ARDVARC
Advancing Rare Disorders: Vascular mAlformation Research Network with CaNVAS
K-T Support Group
ARISEN
Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus Research Network
Sumaira Foundation
BDCRC
Batten Disease Clinical Research Consortium
Batten Disease Support & Research Association
BBD
Brittle Bone Disorders
Osteogenesis Imperfecta Foundation, Inc.
CReATe
Clinical Research in ALS and Related Disorders for Therapeutic Development
Muscular Dystrophy Association
CPIC
Congenital and Perinatal Infections Consortium
National CMV Foundation
CEGIR
Consortium of Eosinophilic Gastrointestinal Disease Researchers
American Partnership for Eosinophilic Disorders
DSC
Developmental Synaptopathies Consortium
PTEN Foundation
GLIA-CTN
The Global Leukodystrophy Initiative Clinical Trials Network
Chloe’s Fight Rare Disease Foundation
FamilieSCN2A Foundation
IMPACT
Initiation of a cohort to define pathogenic Mechanisms, Precision diagnosis And Complications of Thrombotic Microangiopathies: The IMPACT Study
United States Thrombotic Microangiopathy (USTMA)
MGNet
Myasthenia Gravis Rare Disease Network
Myasthenia Gravis Association
NASCARR
Network for Advancing Sex Chromosome Aneuploidy Research Readiness
Association for X and Y Chromosome Variations (AXYS)
NAMDC
North American Mitochondrial Disease Consortium
United Mitochondrial Disease Foundation (UMDF)
PFN-STRIDE
Pediatric Fungal Network STudy of Rare Invasive Fungal DisEases in Immunocompromised Pediatric Patients
MYCARE
PHEFREE
Phenylalanine Families and Researchers Exploring Evidence
National PKU Alliance (NPKUA)
RBDC
Rare Bronchiectatic Diseases Consortium
PCD Foundation
ROAR
Rare Organic Acidemias Research Consortium
Propionic Acidemia Foundation
Organic Acidemia Association
SP-CERN
Spastic Paraplegia Centers of Excellence Research Network
Spastic Paraplegia Foundation, Inc.
