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.

 

Steering Committee Leadership


Kristen Wheeden

Kristen Wheeden
RDCRN-CPAG Steering Committee Chair
Executive Director


Kristen Wheeden

Kristin Anthony
RDCRN-CPAG Steering Committee Chair
President

 

Steering Committee Members


CPAG Steering Committee
Patient Advocacy Group Representatives
as of 12/14/20

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, Chair thart@oif.org Osteogenesis Imperfecta Foundation, Inc.
Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Kuldip Dave
Anne Cooley
kdave@alsa-national.org
ACooley@med.miami.edu
ALS Association (ALSA)
Congenital and Perinatal Infections Consortium (CPIC) Kristen Spytek kristen.spytek@nationalcmv.org National CMV Foundation
Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Ellyn Kodroff
Shay Kyle
Ally Paliana
Ellyn@curedfoundation.org
shay@curedfoundation.org
ally.paliana@yahoo.com
Campaign Urging Research for Eosinophilic Disease (CURED)
Developmental Synaptopathies Consortium (DSC) Steven L Roberds sroberds@tsalliance.org 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 info@cdgcare.com CDG CARE
Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) Michele Manion michelemanion@gmail.com PCD Foundation
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) Maria Kefalas
Erica Barnes
Julia Kramer-Golinkoff
mkefalas67@gmail.com
demo0050@umn.edu
kramergolj@email.chop.edu
The Calliope Joy Foundation
Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) Lex Cowsert lex@exch.npkua.org National PKU Alliance
Inherited Neuropathies Consortium (INC) Amy Gray agray@cmtausa.org CMTA
Lysosomal Disease Network (LDN) Cara O'Neill
Terri Klein
cara.curesff@gmail.com
terri@mpssociety.org
Cure Sanfilippo Foundation
Nephrotic Syndrome Study Network (NEPTUNE) Josh Tarnoff jtarnoff@nephcure.org NephCure Kidney International
North American Mitochondrial Disease Consortium (NAMDC) Brian Harman brian.harman@umdf.org United Mitochondrial Disease Foundation
Porphyrias Consortium (PC) Kristen Wheeden, Co-Chair kristen@porphyriafoundation.org American Porphyria Foundation
Myasthenia Gravis Rare Disease Network (MGNet) Nancy Law nancy.law@myasthenia.org MG Foundation of America
Urea Cycle Disorders Consortium (UCDC) Cynthia Le Mons Cindy@nucdf.org National Urea Cycle Disorders Foundation (NUCDF)
Vasculitis Clinical Research Consortium (VCRC) Joyce A Kullman jakullman@vasculitisfoundation.org Vasculitis Foundation
Primary Immune Deficiency Treatment Consortium (PIDTC) John Boyle
Chris Scalchunes
Lorraine O'Brien
jboyle@primaryimmune.org
cscalchunes@primaryimmune.org
lobrien@primaryimmune.org
Immune Deficiency Foundation (IDF)
Rett Syndrome, MECP2 Duplication, and Rett-related Disorders Consortium (RTT) Dominique Pichard dpichard@rettsyndrome.org Rettsyndrome.org

*In alphabetical order by consortium