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.
Coalition of Patient Advocacy Groups
Steering Committee Leadership
Kristin Anthony
Steering Committee Chair
PTEN Foundation, part of the Developmental Synaptopathies Consortium
Phone: 256-520-8529
Email: kristin@ptenfoundation.org
Andrea Miller
Steering Committee
Co-Chair
CDG Care, part of the Frontiers in Congenital Disorders of Glycosylation Consortium
Phone: 866-295-7910
Email: info@cdgcare.com
Steering Committee Members
2022-2023
| Name | Patient Advocacy Group | Consortium | |
|---|---|---|---|
| Marianne Clancy | Mariannes.clancy@curehht.org | The HHT Foundation International | Brain Vascular Malformation Consortium (BVMC) |
| Tracy Hart | thart@oif.org | Osteogenesis Imperfecta Foundation, Inc. | Brittle Bone Disorders (BBD) |
| Penny Dacks | pdacks@theaftd.org | The Association for Frontotemporal Degeneration (AFTD) | Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) |
| Kristen Spytek | kristen.spytek@nationalcmv.org | National CMV Foundation | Congenital and Perinatal Infections Consortium (CPIC) |
| Mary Jo Strobel | mjstrobel@apfed.org | APFED | Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) |
| Kristin Anthony, Chair
Steven L Roberds |
kristin@ptenfoundation.org
sroberds@tsalliance.org |
PTEN Foundation
Tuberous Sclerosis Alliance |
Developmental Synaptopathies Consortium (DSC) |
| Janet Hieshetter | jhieshetter@dystonia-foundation.org | Dystonia Medical Research Foundation | Dystonia Coalition (DC) |
| Andrea Miller, Co-Chair | info@cdgcare.com | CDG CARE | Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) |
| Michele Manion | mmanion@pcdfoundation.org | PCD Foundation | Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) |
| Erica Barnes
Patrick Winters |
erica.barnes@state.mn.us
patrick.winters@agsamericas.org |
Chloe's Fight Rare Disease Foundation
Aicardi-Goutieres Syndrome Advocacy Association |
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) |
| Amy Gray | agray@cmtausa.org | CMTA | Inherited Neuropathies Consortium (INC) |
| Terri Klein | terri@mpssociety.org | National MPS Society | Lysosomal Disease Network (LDN) |
| Wendi Huff | whuff@myasthenia.org | MG Foundation of America | Myasthenia Gravis Rare Disease Network (MGNet) |
| Rebecca Cook | rcook@nephcure.org | NephCure Kidney International | Nephrotic Syndrome Study Network (NEPTUNE) |
| Brian Harman | brian.harman@umdf.org | United Mitochondrial Disease Foundation | North American Mitochondrial Disease Consortium (NAMDC) |
| Lauren Youngborg | lauren.youngborg@npkua.org | National PKU Alliance | Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) |
| Kristen Wheeden | Kristen@porphyria.org | United Porphyrias Association | Porphyrias Consortium (PC) |
| Chris Scalchunes | cscalchunes@primaryimmune.org | Immune Deficiency Foundation (IDF) | Primary Immune Deficiency Treatment Consortium (PIDTC) |
| Dominique Pichard | dpichard@rettsyndrome.org | Rettsyndrome.org | Rett Syndrome, MECP2 Duplication, and Rett-related Disorders Consortium (RTT) |
| Tresa Warner | twarner@nucdf.org | National Urea Cycle Disorders Foundation (NUCDF) | Urea Cycle Disorders Consortium (UCDC) |
| Joyce A Kullman | jakullman@vasculitisfoundation.org | Vasculitis Foundation | Vasculitis Clinical Research Consortium (VCRC) |
*In alphabetical order by consortium