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

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Kristin Anthony

RDCRN-CPAG Steering Committee Chair


PTEN Foundation

part of the Developmental Synaptopathies Consortium
Phone: 256-520-8529
Email: kristin@ptenfoundation.org

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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
Email: info@cdgcare.com

CPAG Steering Committee



Patient Advocacy Group Representatives

2022-2023

CONSORTIUM NAME EMAIL 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,
Chair

Steven L Roberds

kristin@ptenfoundation.org

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,
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

erica.barnes@state.mn.us

patrick.winters@agsamericas.org

Chloe’s Fight Rare Disease Foundation

Aicardi-Goutieres Syndrome Advocacy Association

Inherited Neuropathies Consortium (INC) Amy Gray agray@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
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