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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.

CPAG Steering Committee

Patient Advocacy Group Representatives


Brain Vascular Malformation Consortium (BVMC)Marianne Clancymariannes.clancy@curehht.orgThe HHT Foundation International
Brittle Bone Disorders (BBD)Tracy Hartthart@oif.orgOsteogenesis Imperfecta Foundation, Inc.
Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe)Paul Larkinpaul.larkin@als.orgThe ALS Association
Congenital and Perinatal Infections Consortium (CPIC)Kristen Spytekkristen.spytek@nationalcmv.orgNational CMV Foundation
Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)Ellyn Kodroff, Co-Chairellyn@curedfoundation.orgCURED
Developmental Synaptopathies Consortium (DSC)Steven L Roberdssroberds@tsalliance.orgPTEN Foundation
Tuberous Sclerosis Alliance
Dystonia Coalition (DC)Janet Hieshetterjhieshetter@dystonia-foundation.orgDystonia Medical Research Foundation
Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC)Andrea Miller, Chair
info@cdgcare.comCDG CARE
Genetic Disorders of Mucociliary Clearance Consortium (GDMCC)Michele Manionmmanion@pcdfoundation.orgPCD Foundation
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN)

Erica Barnes

Melody Kisor

Chloe’s Fight Rare Disease Foundation


Inherited Neuropathies Consortium (INC)Katherine Forseykatherine@cmtausa.orgCMTA
Lysosomal Disease Network (LDN)

Terri Klein

Matthew Ellinwood

National MPS Society


Myasthenia Gravis Rare Disease Network (MGNet)Wendi Huffwhuff@myasthenia.orgMG Foundation of America
Nephrotic Syndrome Study Network (NEPTUNE)Rebecca Cookrcook@nephcure.orgNephCure Kidney International
North American Mitochondrial Disease Consortium (NAMDC)Brian Harmanbrian.harman@umdf.orgUnited Mitochondrial Disease Foundation (UMDF)
Phenylalanine Families and Researchers Exploring Evidence (PHEFREE)

Elaina Jurecki

Kelsey McQueen

National PKU Alliance
Porphyrias Consortium (PC)Kristen Wheedenkristen@porphyria.orgUnited Porphyrias Association
Primary Immune Deficiency Treatment Consortium (PIDTC)Chris Scalchunescscalchunes@primaryimmune.orgImmune Deficiency Foundation (IDF)
Urea Cycle Disorders Consortium (UCDC)Tresa Warnertwarner@nucdf.orgNational Urea Cycle Disorders Foundation (NUCDF)
Vasculitis Clinical Research Consortium (VCRC)Joyce A Kullmanjakullman@vasculitisfoundation.orgVasculitis Foundation

*In alphabetical order by consortium