2021 Speakers

Please check back often for updates.

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

Richardae Araojo, PharmD, MS

CEO Partner
Flagship Pioneering

Christopher Austin, MD

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

Robyn Bent, RN, MS, CAPT

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

Olaf Bodamer, MD, PhD

Programme Director
Rare Diseases International (RDI)

Matthew Bolz-Johnson

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

Vence Bonham Jr., JD

Program Director, Office of Rare Diseases Research
NIH NCATS

PJ Brooks, PhD

Health Reporter
Politico

Adam Cancryn

Director
FDA Center for Drug Evaluation and Research

Patrizia Cavazzoni, MD


FDA Office of Patient Affairs

Susan Chittooran, MSW

Executive Director
Cure HHT

Marianne Clancy, RDH, MPA

Chief Executive Officer
Rett Syndrome Research Trust

Monica Coenraads

Director
National Institutes of Health (NIH)

Francis S. Collins, MD, PhD

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

Stephanie Coury, MS, CGC

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

Jeanine D’Armiento, MD, PhD

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

Diva De Leon-Crutchlow, MD

Membership Manager
NORD

Ashanthi De Silva, MPA

Chief Medical Officer
Osmosis

Rishi Desai, MD, MPH

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

David Dimmock, MD

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

Kathleen Donohue, MD

Director of Membership
NORD

Debbie Drell

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

Khair ElZarrad, PhD, MPH

Assistant Professor/Co-Director of Sickle Cell & Thalassemia Program
Baylor College of Medicine/Texas Children's Hospital

Titilope Fasipe, MD, PhD

Vice Chair of the Board
CombinedBrain

Amber Freed

Head, US & Sanofi Genzyme Corporate Affairs
Sanofi

Adam Gluck

VP DCT Operations
Syneos Health

Noolie Gregory

Biology Group Leader, Division of Preclinical Innovation
NCATS, NIH

Matthew Hall, PhD

Chair
NORD Board of Directors

Kay Holcombe, MS

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

Debra Houry, MD MPH

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

Karen Jackler, MPH

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

Gail Jarvik, MD, PhD

Executive Director
National Tay-Sachs & Allied Diseases Assoc.

Sue Kahn

Senior Health Advisor
United States Senate Committee on Finance

Anna Kaltenboeck

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

Sadhna Khatri, PharmD, MPH

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

Bruce Korf, MD, PhD

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

Elizabeth Kunkoski

Associate Director, Division of Clinical Evaluation, Pharmacology, and Toxicology
Office of Tissues and Advanced Therapies, CBER at FDA

Larissa Lapteva, MD, MHS, MBA

Associate Director for Rare Diseases
FDA Center for Drug Evaluation and Research

Kerry Jo Lee, MD

Founder & CEO
Cholangiocarcinoma Foundation

Stacie Lindsey

Co-Chair
Decentralized Trials & Research Alliance

Craig Lipset

Senior Policy Advisor
Officer of the Republican Leader House of Representatives

Ryan Long

Co Founder & Chief Executive Officer
Rallybio

Martin Mackay, PhD

Assemblyman 77th District
CA State Assembly

Brian Maienschein

Sr. Director of Clinical Development
Intellia

Michael Maitland, MD, PhD

Director
CBER FDA

Peter Marks, MD, PhD

General Manager, US
Advicenne Inc

Robbie McCarthy

Arkansas Rare Action Network Volunteer State Ambassador
NORD Rare Action Network

Kim McClellan

Principal, Inclusion Strategy & Partnering
Chief Diversity Office, Genentech

Meghan McKenzie, MA

President & CEO
BIO

Michelle McMurry-Heath, MD, PhD

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

Christy Moore, MS, LCGC

Corporate Vice President
Microsoft Health & Life Sciences

Greg Moore, MD, PhD

Chief Executive Officer
American College of Medical Genetics & Genomics

Maximilian Muenke, MD

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

Katherine Needleman, PhD

Chief Medical & Scientific Officer
NORD

Edward Neilan, MD, PhD

Director, Office of Rare Diseases Research National Center for Advancing Translational Science (NCATS)
National Institutes of Health (NIH)

Anne Pariser, MD

Chief , Intellectual & Developmental Disabilities Branch
NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Melissa Parisi, MD, PhD

Research and Policy Director
Congenital Hyperinsulinism International

Tai Pasquini, MPA, PhD

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

Phillip Pearl, MD

State Delegate District 21 (D)
Maryland House of Delegates

Joseline Peña-Melnyk

Co-Founder and President
KrabbeConnect

Stacy Pike-Langenfeld

Senior Medical Director
Oak Street Health

Michael Poku, MD, MBA

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

Asma Rashid, MS CGC

President
United Leukodystrophy Foundation

Robert Rauner

Director Of Policy
NORD

Heidi Ross

Senior VP, Research & Development
Travere

William Rote, PhD

Acting Director
NIH NCATS

Joni L Rutter, PhD

Asst. Director, Digital Health Center of Excellence
FDA Office of Strategic Partnerships and Technology Innovation, CDRH

Anindita Saha

President and CEO
NORD

Peter Saltonstall

Director of Strategic Planning & Project Development
NORD

Lisa Sarfaty, MPH

President
Scheer & Company

David Scheer

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

Wade Schulz, MD, PhD, MD, PhD

Director
FDA Center for Devices & Radiological Health

Jeffrey C. Shuren, MD, JD

Professor of Clinical Pediatrics
University of CA, San Francisco

Anne Slavotinek, MD, PhD


University of Illinois College of Law

Brian Smith, JD, MPH

President of the Board
Alagille Syndrome Alliance

Roberta Smith

Chief Data Officer
The Hospital for Sick Children

Rachel Soloman

Division Chief, Genetics and Metabolism and Director, Rare Disease Institute
Children’s National Hospital

Marshall Summar, MD

Deputy Division Director
Office of Strategic Partnerships and Technology Innovation/CDRH/FDA

Michelle Tarver, MD, PhD

Head, Corporate Affairs
Alexion / Astrazeneca Rare Disease

Tamar Thompson

Assistant Director of Communications
The Life Raft Group

Carolyn Tordella

Director of Partnerships
Rare Cancer Research Foundation

Barbara Van Hare

Global Program Lead Rare Genetics & Hematology Therapeutic Area
Takeda Pharmaceuticals

Jens Wendland, MD

Chief Medical Officer
WebMD

John Whyte, MD

President and CEO
Canadian Organization for Rare Disorders

Durhane Wong-Rieger

Acting Commissioner
US Food & Drug Administration

Janet Woodcock, MD

Founder and CEO
OffScrip Media

Matthew Zachary

Sr Director Patient Advocacy
Pfizer

Michael Zincone

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