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

Kristen Wheeden

Kristen Wheeden
Steering Committee

Kristen Anthony

Kristin Anthony
Steering Committee


Steering Committee Members


Name Email Patient Advocacy Group Consortium
Marianne Clancy The HHT Foundation International Brain Vascular Malformation Consortium (BVMC)
Tracy Hart Osteogenesis Imperfecta Foundation, Inc. Brittle Bone Disorders (BBD)
Penny Dacks The Association for Frontotemporal Degeneration (AFTD) Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe)
Kristen Spytek National CMV Foundation Congenital and Perinatal Infections Consortium (CPIC)
Amy Zicarelli EOS Coalition Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
Kristin Anthony, Co-Chair
Steven L Roberds
PTEN Foundation
Tuberous Sclerosis Alliance
Developmental Synaptopathies Consortium (DSC)
Janet Hieshetter Dystonia Medical Research Foundation Dystonia Coalition (DC)
Andrea Miller CDG CARE Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC)
Michele Manion PCD Foundation Genetic Disorders of Mucociliary Clearance Consortium (GDMCC)
Erica Barnes
Kristie DeMarco
Chloe's Fight Rare Disease Foundation The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN)
Lex Cowsert National PKU Alliance Phenylalanine Families and Researchers Exploring Evidence (PHEFREE)
Amy Gray CMTA Inherited Neuropathies Consortium (INC)
Terri Klein National MPS Society Lysosomal Disease Network (LDN)
Josh Tarnoff NephCure Kidney International Nephrotic Syndrome Study Network (NEPTUNE)
Brian Harman United Mitochondrial Disease Foundation North American Mitochondrial Disease Consortium (NAMDC)
Kristen Wheeden, Chair United Porphyrias Association Porphyrias Consortium (PC)
Wendi Huff MG Foundation of America Myasthenia Gravis Rare Disease Network (MGNet)
Cynthia Le Mons National Urea Cycle Disorders Foundation (NUCDF) Urea Cycle Disorders Consortium (UCDC)
Joyce A Kullman Vasculitis Foundation Vasculitis Clinical Research Consortium (VCRC)
Chris Scalchunes Immune Deficiency Foundation (IDF) Primary Immune Deficiency Treatment Consortium (PIDTC)
Dominique Pichard Rett Syndrome, MECP2 Duplication, and Rett-related Disorders Consortium (RTT)

*In alphabetical order by consortium