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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

PTEN Foundation

part of the Developmental Synaptopathies Consortium
Phone: 256-520-8529

Andrea Miller

Andrea Miller

RDCRN-CPAG Steering Committee Co-Chair

CDG Care

part of the Frontiers in Congenital Disorders of Glycosylation Consortium
Phone: 866-295-7910

CPAG Steering Committee

Patient Advocacy Group Representatives


Brain Vascular Malformation Consortium (BVMC) Marianne Clancy The HHT Foundation International
Brittle Bone Disorders (BBD) Tracy Hart Osteogenesis Imperfecta Foundation, Inc.
Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Penny Dacks The Association for Frontotemporal Degeneration (AFTD)
Congenital and Perinatal Infections Consortium (CPIC) Kristen Spytek National CMV Foundation
Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Mary Jo Strobel APFED
Developmental Synaptopathies Consortium (DSC)

Kristin Anthony,

Steven L Roberds

PTEN Foundation
Tuberous Sclerosis Alliance
Dystonia Coalition (DC) Janet Hieshetter Dystonia Medical Research Foundation
Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) Andrea Miller,
Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) Michele Manion 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 CMTA
Lysosomal Disease Network (LDN) Terri Klein National MPS Society
Myasthenia Gravis Rare Disease Network (MGNet) Wendi Huff MG Foundation of America
Nephrotic Syndrome Study Network (NEPTUNE) Rebecca Cook NephCure Kidney International
North American Mitochondrial Disease Consortium (NAMDC) Brian Harman United Mitochondrial Disease Foundation (UMDF)
Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) Elaina Jurecki National PKU Alliance
Porphyrias Consortium (PC) Kristen Wheeden United Porphyrias Association
Primary Immune Deficiency Treatment Consortium (PIDTC) Chris Scalchunes Immune Deficiency Foundation (IDF)
Rett Syndrome, MECP2 Duplication, and Rett-related Disorders Consortium (RTT) Dominique Pichard
Urea Cycle Disorders Consortium (UCDC) Tresa Warner National Urea Cycle Disorders Foundation (NUCDF)
Vasculitis Clinical Research Consortium (VCRC) Joyce A Kullman Vasculitis Foundation

*In alphabetical order by consortium