CPAG Steering Committee
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.
CPAG Steering Committee
Patient Advocacy Group Representatives
2024-2025
| CONSORTIUM | NAME | PATIENT ADVOCACY GROUP | |
|---|---|---|---|
| Brain Vascular Malformation Consortium (BVMC) | Marianne Clancy | mariannes.clancy@curehht.org | The HHT Foundation International |
| Brittle Bone Disorders (BBD) | Tracy Hart | thart@oif.org | Osteogenesis Imperfecta Foundation, Inc. |
| Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) | Brian Lin | blin@mdausa.org | Muscular Dystrophy Association (MDA) |
| Congenital and Perinatal Infections Consortium (CPIC) | Kristen Spytek | kristen.spytek@nationalcmv.org | National CMV Foundation |
| Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) | Ellyn Kodroff, Chair | ellyn@curedfoundation.org | CURED |
| Developmental Synaptopathies Consortium (DSC) | Steven L Roberds | sroberds@tsalliance.org | PTEN Foundation Tuberous Sclerosis Alliance |
| Dystonia Coalition (DC) | Janet Hieshetter | jhieshetter@dystonia-foundation.org | Dystonia Medical Research Foundation |
| Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) | Andrea Miller | info@cdgcare.com | CDG CARE |
| Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) | Michele Manion | mmanion@pcdfoundation.org | PCD Foundation |
| The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) | Erica Barnes Morgan Voigt | Chloe’s Fight Rare Disease Foundation Cure LBSL | |
| Inherited Neuropathies Consortium (INC) | Katherine Forsey | katherine@cmtausa.org | CMTA |
| Lysosomal Disease Network (LDN) | Terri Klein Matthew Ellinwood | National MPS Society
| |
| Myasthenia Gravis Rare Disease Network (MGNet) | Allison Foss | allisonfoss@mgakc.org | Myasthenia Gravis Association |
| Nephrotic Syndrome Study Network (NEPTUNE) | Susan Brisendine | susan@nephcure.org | NephCure Kidney International |
| Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) | Elaina Jurecki Kelsey McQueen, Co-Chair | National PKU Alliance | |
| Porphyrias Consortium (PC) | Kristen Wheeden | kristen@porphyria.org | United Porphyrias Association |
| Primary Immune Deficiency Treatment Consortium (PIDTC) | Chris Scalchunes | cscalchunes@primaryimmune.org | Immune Deficiency Foundation (IDF) |
| Urea Cycle Disorders Consortium (UCDC) | Tresa Warner | twarner@nucdf.org | National Urea Cycle Disorders Foundation (NUCDF) |
| Vasculitis Clinical Research Consortium (VCRC) | Joyce A Kullman | jakullman@vasculitisfoundation.org | Vasculitis Foundation |
*In alphabetical order by consortium