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 Anthony

Kristin Anthony
Steering Committee Chair


Andrea Miller

Andrea Miller
Steering Committee
Co-Chair

 

Steering Committee Members


2022-2023

Name Email 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 michelemanion@gmail.com PCD Foundation Genetic Disorders of Mucociliary Clearance Consortium (GDMCC)
Erica Barnes
Patrick Winters
demo0050@umn.edu
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@unitedporphyrias.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