Associate Commissioner for Minority Health
FDA Office of Minority Health and Health Equity

CEO Partner
Flagship Pioneering

CAPT, U.S. Director, Patient-Focused Drug Development Program
FDA, Center for Drug Evaluation and Research (CDER)

Park Gerald Chair in Genetics & Genomics, Associate Chief of Genetics & Genomics
Harvard Medical School

Programme Director
Rare Diseases International (RDI)

Deputy Director (Acting)
National Human Genome Research Institute, NIH

Program Director, Office of Rare Diseases Research
NIH NCATS

Health Reporter
Politico

Director
FDA Center for Drug Evaluation and Research

FDA Office of Patient Affairs

Executive Director
Cure HHT

Chief Executive Officer
Rett Syndrome Research Trust

Director
National Institutes of Health (NIH)

Senior Genetic Counselor, Division of Genetics & Genomics
Boston Children's Hospital

Director
The Center for LAM & Rare Lung Diseases at Columbia University

Director of the Congenital Hyperinsulinism Center
The Children's Hospital of Philadelphia

Membership Manager
NORD

Chief Medical Officer
Osmosis

Sr. Medical Director
Rady Children's Institue for Genomic Medicine

Director, Division of Rare Diseases and Medical Genetics
FDA Center for Drug Evaluation and Research (CDER)

Director of Membership
NORD

Director
Office of FDA Medical Policy, Center for Drug Evaluation & Research

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
NCATS, NIH

Chair
NORD Board of Directors

Acting Principal Deputy Director
Centers for Disease Control and Prevention (CDC)

Patient Engagement Manager, Office of the Director
FDA Center for Biologics Evaluation and Research (CBER)

Head, Division of Medical Genetics
University of Washington School of Medicine

Executive Director
National Tay-Sachs & Allied Diseases Assoc.

Senior Health Advisor
United States Senate Committee on Finance

Supervisory Director, Professional Affairs and Stakeholder Engagement
Office of the Center Director, FDA Center for Drug Evaluation & Research

Associate Dean for Genomic Medicine, Chief Genomics Officer
UAM School of Medicine, University of Alabama at Birmingham

Health Science Policy Analyst
FDA Center for Drug Evaluation and Research (CDER)

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

Senior Policy Advisor
Officer of the Republican Leader House of Representatives

Co Founder & Chief Executive Officer
Rallybio

Assemblyman 77th District
CA State Assembly

Sr. Director of Clinical Development
Intellia

Director
CBER FDA

General Manager, US
Advicenne Inc

Arkansas Rare Action Network Volunteer State Ambassador
NORD Rare Action Network

Principal, Inclusion Strategy & Partnering
Chief Diversity Office, Genentech

President & CEO
BIO

Program Manager, Clinical Genetics, Enhanced Clinical Programs
Blue Shield of California

Corporate Vice President
Microsoft Health & Life Sciences

Chief Executive Officer
American College of Medical Genetics & Genomics

Director, Clinical Trials & Natural History Grants Program
FDA Office of Orphan Products Development

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

President, Child Neurology Society; Director of Epilepsy & Clinical Neurophysiology
Boston Children's Hospital, NORD Board of Directors

State Delegate District 21 (D)
Maryland House of Delegates

Co-Founder and President
KrabbeConnect

Senior Medical Director
Oak Street Health

Licensed Genetic Counselor, Division of Genetics & Genomics
Boston Children's Hospital

President
United Leukodystrophy Foundation

Director Of Policy
NORD

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

President
Scheer & Company

Assistant Professor of Laboratory Medicine, Bioinformatics and Computational Health
Yale School of Medicine

Director
FDA Center for Devices & Radiological Health

Professor of Clinical Pediatrics
University of CA, San Francisco

University of Illinois College of Law

President of the Board
Alagille Syndrome Alliance

Chief Data Officer
The Hospital for Sick Children

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

Acting Commissioner
US Food & Drug Administration

Founder and CEO
OffScrip Media

Sr Director Patient Advocacy
Pfizer