Committees

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.

2024-2025 Leadership

Ellyn Kodroff RDCRN-CPAG Steering Committee Chair CURED Foundation Part of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Phone: 847-361-3292 Email: ellyn@curedfoundation.org	Kelsey McQueen RDCRN-CPAG Steering Committee Co-Chair National PKU Alliance Part of the Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) Consortium (CEGIR) Phone: 715-495-4008 Email: kmcqueen@npkua.org

Current Patient Advocacy Group Representatives

The RDCRN Network Steering Committee oversees governance and decision making for trans-network policies and procedures. Its membership includes the principal investigators of the 20 research consortia, leadership of the Coalition of Patient Advocacy Groups (CPAG) and the DMCC, and the program officer based in the NCATS Division of Rare Diseases Research Innovation (DRDRI).

2024 Leadership

David Kimberlin, MD, Co-Chair Principal Investigator, Congenital and Perinatal Infections Consortium  Co-Director, Division of Pediatric Infectious Diseases, University of Alabama at Birmingham	Eva Morava-Kozicz, MD, PhD, Co-Chair Principal Investigator, Frontiers in Congenital Disorders of Glycosylation Consortium  Professor of Medical Genetics, Department of Clinical Genomics, Mayo Clinic	Mustafa Sahin, MD, PhD, Co-Chair Consortium Director, Developmental Synaptopathies Consortium  Associate Chief of Research, Department of Neurology, Boston Children's Hospital

The RDCRN committees are dedicated to solving problems that impact all consortia, creating opportunities for members, and improving the network. They also allow members to connect with other consortia.

Committees include:

• Career Enhancement Committee—The Career Enhancement Committee aims to identify and leverage existing career enhancement programs, provide disease-specific/cross-disease training, and identify networking/learning opportunities within/across consortia.
• Coalition of Patient Advocacy Groups (CPAG) Steering Committee—The CPAG Steering Committee facilitates the development of activities that will benefit the entire CPAG membership. Each rare disease research group (consortium) in the network includes relevant PAGs in consortium membership and activities. These PAG representatives advise the researchers within their consortium by joining network-level discussions and meetings.
• Cross-Consortia Collaboration Committee—The mission of the Cross-Consortia Collaboration Committee is to foster collegiality, exchange, and alignment among the RDCRN consortia.
• Data Sharing Committee—The Data Sharing Committee aims to develop regulatory/legal language to allow data sharing and determine strategies/policies for data sharing. These resources are available to anyone seeking data sharing guidance.
• Data Standards Committee—The Data Standards Committee is working to define data standards to improve data quality, usability, and interoperability using FAIR principles: Findable, Accessible, Interoperable, and Reusable. These resources are available to anyone seeking data standards guidance.
• Diversity Committee—The mission of the Diversity Committee is to advance medical research of rare diseases through awareness and actions that foster diversity, equity, inclusion, and accessibility (DEIA) efforts that are tailored to the unique needs of all members of the rare disease community.
• Genomics Special Interest Group—The Genomics Special Interest Group aims to share research experiences in working with genomics data in the rare diseases space.
• Network Steering Committee—The Network Steering Committee aims to identify Network-level scientific and policy issues, review and approve all RDCRN-wide policies, and ensure dissemination to the wider scientific community.
• Statistics and Epidemiology Special Interest Group—The Statistics and Epidemiology Special Interest Group aims to research and evaluate innovative study designs, statistical methodologies, strategies for sharing of programming code, utility of NCATS-provided resources, and reporting of statistical results.