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. Public Health Service and Director, Patient-Focused Drug Development
OCD, CDER at FDA

Robyn Bent, RN, MS, CAPT

Programme Director
Rare Diseases International (RDI)

Matthew Bolz-Johnson

Program Director, Office of Rare Diseases Research
NIH NCATS

PJ Brooks, PhD

Director
FDA Center for Drug Evaluation and Research

Patrizia Cavazzoni, MD


FDA

Susan Chittooran, MSW

Executive Director
Cure HHT

Marianne Clancy, RDH, MPA

Lead Patient Navigator
Advicenne

Kimberley Cranstoun, MA

Professor of Pediatrics/Director of the Congenital Hyperinsulinism Center
Perelman School of Medicine and the University of Pennsylvania/The Children's Hospital of Philadelphia

Diva De Leon-Crutchlow

Chief Medical Officer
Osmosis

Rishi Desai, MD, 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
NIH NCATS

Matthew D. Hall, PhD

Chief Diversity Officer
Genentech

Quita Highsmith, MBA

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
CBER at FDA

Karen Jackler, MPH

The Arno G. Motulsky Endowed Chair in Medicine; Professor and Head, Division of Medical Genetics
University of Washington School of Medicine

Gail Jarvik, MD, PhD

Professional Affairs and Stakeholder Engagement (PASE)
Office of the Center Director (OCD), CDER at FDA

Sadhna Khatri, PharmD, MPH

Health Science Policy Analyst
FDA

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

Director
CBER FDA

Peter Marks, MD, PhD

Arkansas Rare Action Network Community Engagement Liason
NORD Rare Action Network

Kim McClellan

President & CEO
BIO

Michelle McMurry-Heath, MD, PhD

Humanitarian, Social Justice Advocate
SMA, UN Advocate for Sustainable Development Goals

Edward Ndopu

Director, Orphan Products Grants Program
FDA Office of Orphan Products

Katherine Needleman, PhD

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

Co-Founder and President
KrabbeConnect

Stacy Pike-Langenfeld

Senior Medical Director
Oak Street Health

Michael Poku, MD, MBA

President
United Leukodystrophy Foundation

Robert Rauner

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

Director
FDA Center for Devices & Radiological Health

Jeffrey C. Shuren, MD, JD


University of Illinois College of Law

Brian Smith, JD, MPH

President of the Board
Alagille Syndrome Alliance

Roberta Smith

Division Chief, Genetics and Metabolism and Director, Rare Disease Institute
Division Chief, Genetics and Metabolism and Director, Rare Disease Institute

Marshall Summar, MD

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

Michelle Tarver, MD, PhD

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

Founder and CEO
OffScrip Media

Matthew Zachary

Sr Director Patient Advocacy
Pfizer

Michael Zincone

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