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.
RDCRN-CPAG Leadership
Kristin Anthony
RDCRN-CPAG Steering Committee Chair
part of the Developmental Synaptopathies Consortium
Phone: 256-520-8529
Email: kristin@ptenfoundation.org
Andrea Miller
RDCRN-CPAG Steering Committee Co-Chair
part of the Frontiers in Congenital Disorders of Glycosylation Consortium
Phone: 866-295-7910
Email: info@cdgcare.com
CPAG Steering Committee
Patient Advocacy Group Representatives
2022-2023
| 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) | Penny Dacks | pdacks@theaftd.org | The Association for Frontotemporal Degeneration (AFTD) |
| Congenital and Perinatal Infections Consortium (CPIC) | Kristen Spytek | kristen.spytek@nationalcmv.org | National CMV Foundation |
| Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) | Mary Jo Strobel | mjstrobel@apfed.org | APFED |
| Developmental Synaptopathies Consortium (DSC) |
Kristin Anthony, Steven L Roberds |
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, Co-Chair |
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 Patrick Winters |
Chloe’s Fight Rare Disease Foundation Aicardi-Goutieres Syndrome Advocacy Association |
|
| Inherited Neuropathies Consortium (INC) | Katherine Forsey | katherine@cmtausa.org | CMTA |
| Lysosomal Disease Network (LDN) | Terri Klein | terri@mpssociety.org | National MPS Society |
| Myasthenia Gravis Rare Disease Network (MGNet) | Wendi Huff | whuff@myasthenia.org | MG Foundation of America |
| Nephrotic Syndrome Study Network (NEPTUNE) | Rebecca Cook | rcook@nephcure.org | NephCure Kidney International |
| North American Mitochondrial Disease Consortium (NAMDC) | Brian Harman | brian.harman@umdf.org | United Mitochondrial Disease Foundation (UMDF) |
| Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) | Elaina Jurecki | erjurecki@outlook.com | 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) |
| Rett Syndrome, MECP2 Duplication, and Rett-related Disorders Consortium (RTT) | Dominique Pichard | dpichard@rettsyndrome.org | Rettsyndrome.org |
| 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