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Associate Commissioner for Minority Health
FDA Office of Minority Health and Health Equity
CEO Partner
Flagship Pioneering
CAPT, U.S. Public Health Service and Director, Patient-Focused Drug Development
OCD, CDER at FDA
Programme Director
Rare Diseases International (RDI)
Deputy Director(Acting) Office of the Driector Associate Investigator, Social & Behavioral Research Branch
National Human Genome Research Institute, NIH
Program Director, Office of Rare Diseases Research
NIH NCATS
Director
FDA Center for Drug Evaluation and Research
FDA
Executive Director
Cure HHT
Lead Patient Navigator
Advicenne
Professor of Pediatrics/Director of the Congenital Hyperinsulinism Center
Perelman School of Medicine and the University of Pennsylvania/The Children's Hospital of Philadelphia
Chief Medical Officer
Osmosis
Sr. Medical Director
Rady Children's Institue for Genomic Medicine
Assistant Professor/Co-Director of Sickle Cell & Thalassemia Program
Baylor College of Medicine/Texas Children's Hospital
Vice Chair of the Board
CombinedBrain
Head, US & Sanofi Genzyme Corporate Affairs
Sanofi
VP DCT Operations
Syneos Health
Biology Group Leader, Division of Preclinical Innovation
NIH NCATS
Chief Diversity Officer
Genentech
Chair
NORD Board of Directors
Acting Principal Deputy Director
Centers for Disease Control and Prevention (CDC)
Patient Engagement Manager, Office of the Director
CBER at FDA
The Arno G. Motulsky Endowed Chair in Medicine; Professor and Head, Division of Medical Genetics
University of Washington School of Medicine
Executive Director
National Tay-Sachs & Allied Diseases Assoc.
Professional Affairs and Stakeholder Engagement (PASE)
Office of the Center Director (OCD), CDER at FDA
Health Science Policy Analyst
FDA
Associate Director, Division of Clinical Evaluation, Pharmacology, and Toxicology
Office of Tissues and Advanced Therapies, CBER at FDA
Associate Director for Rare Diseases
FDA Center for Drug Evaluation and Research
Founder & CEO
Cholangiocarcinoma Foundation
Co-Chair
Decentralized Trials & Research Alliance
Assemblyman 77th District
State of CA
Director
CBER FDA
Arkansas Rare Action Network Community Engagement Liason
NORD Rare Action Network
President & CEO
BIO
Director, Orphan Products Grants Program
FDA Office of Orphan Products
Chief Medical & Scientific Officer
NORD
Director, Office of Rare Diseases Research National Center for Advancing Translational Science (NCATS)
National Institutes of Health (NIH)
Chief , Intellectual & Developmental Disabilities Branch
NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Research and Policy Director
Congenital Hyperinsulinism International
Co-Founder and President
KrabbeConnect
Senior Medical Director
Oak Street Health
President
United Leukodystrophy Foundation
Senior VP, Research & Development
Travere
Acting Director
NIH NCATS
Asst. Director, Digital Health Center of Excellence
FDA Office of Strategic Partnerships and Technology Innovation, CDRH
President and CEO
NORD
Director of Strategic Planning & Project Development
NORD
Director
FDA Center for Devices & Radiological Health
University of Illinois College of Law
President of the Board
Alagille Syndrome Alliance
Division Chief, Genetics and Metabolism and Director, Rare Disease Institute
Children’s National Hospital
Deputy Division Director
Office of Strategic Partnerships and Technology Innovation/CDRH/FDA
Head, Corporate Affairs
Alexion / Astrazeneca Rare Disease
Assistant Director of Communications
The Life Raft Group
Director of Partnerships
Rare Cancer Research Foundation
Global Program Lead Rare Genetics & Hematology Therapeutic Area
Takeda Pharmaceuticals
Chief Medical Officer
WebMD
President and CEO
Canadian Organization for Rare Disorders
Founder and CEO
OffScrip Media
Sr Director Patient Advocacy
Pfizer