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
Chair


Kristen Anthony

Kristin Anthony
Steering Committee
Co-Chair

 

Steering Committee Members


2021-2022

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)
Amy Zicarelli amy@eoscoalition.org EOS Coalition Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
Kristin Anthony, Co-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 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
Kristie DeMarco
demo0050@umn.edu
kristiedemarco@globaldarefoundation.org
Chloe's Fight Rare Disease Foundation The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN)
Lex Cowsert lex@exch.npkua.org National PKU Alliance Phenylalanine Families and Researchers Exploring Evidence (PHEFREE)
Amy Gray agray@cmtausa.org CMTA Inherited Neuropathies Consortium (INC)
Terri Klein terri@mpssociety.org National MPS Society Lysosomal Disease Network (LDN)
Josh Tarnoff jtarnoff@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)
Kristen Wheeden, Chair kristen@unitedporphyrias.org United Porphyrias Association Porphyrias Consortium (PC)
Wendi Huff whuff@myasthenia.org MG Foundation of America Myasthenia Gravis Rare Disease Network (MGNet)
Cynthia Le Mons Cindy@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)
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)

*In alphabetical order by consortium