Rare Disease Summit 2023 - North America | Bamberg Health | 2 November 2023 | The Harmonie Club of NY, 4 E 60th St, New York, NY 10022, USA

This Summit is a premier event for healthcare professionals, patient advocacy groups, and industry leaders to come together and discuss the latest developments in the field of rare diseases. The summit will feature keynote speakers, panel discussions, and interactive sessions that will provide attendees with valuable insights into the challenges and opportunities facing the rare disease community.

Attendees will have the opportunity to hear from experts in the field and engage in discussions on topics such as research and development, patient engagement, and access to care. They will also be able to network with other stakeholders and learn about new advances in diagnosis and treatment.

Topics to be covered:
• Government Plans
• Access & Financing
• Clinical Research and Innovation
• Artificial Intelligence and Data
• Social & Patient

Whether you are a healthcare provider, patient advocate, or industry professional, the North America Rare Disease Summit offers a unique opportunity to connect, collaborate, and learn about the latest developments in the field. Register now and be a part of this important gathering of leaders in rare disease care.

2023 Speakers

Gustavo Rivera
New York State State Senator and Chairman, Committee on Health

Jenifer Waldrop
Rare Disease Diversity Coalition (RDDC)
Executive Director

Benjamin Forred
Director of Translational Research, the CoRDS Rare Disease Registry, and the Experimental Therapeutics Screening Facility, Sanford Health

N. Matthew Ellinwood
Chief Scientific Officer, National MPS Society

Julia Jenkins
Executive Director, EveryLife Foundation for Rare Diseases

Marc Yale
President, Board of Directors, The International Alliance of Dermatology Patient Organizations (GlobalSkin)

Tiina Urv
Innovation, NIH National Center for Advancing Translational Sciences (NCATS)
Program Director, Division of Rare Diseases Research

Wilma Alvarado-Little
Director of the Office of Minority Health and Health Disparities Prevention, Associate Commissioner at New York State Department of Health

Shantel Hébert-Magee
Chief Medical Officer - Medicaid, Louisiana Department of Health

Hilary D. Marston
Chief Medical Officer, Food & Drug Administration (FDA)

Susan Marx Mashni
Senior Vice President, Chief Pharmacy Officer, Mount Sinai Health System

Michael Ybarra
Chief Medical Officer and Vice President of Strategic Alliances, PhRMA

Gene Trogan
Boehringer Ingelheim USA
Director, Specialty Care Market Access

Cecil O. Lynch
Managing Director & Global Biomedical Informatics Lead, Accenture

Kausheek Nandy
Head of IT, Boehringer Ingelheim Canada Ltd

Shilpa Kobren
Research Fellow, Department of Biomedical Informatics, Harvard Medical School

Mary Saltz
Clinical Informatics Faculty at Stony Brook University, NY
Chief Medical Information Office, Department of Biomedical Informatics -

Evadnie Rampersaud
Principal Scientist, Center for Applied Bioinformatics, St. Jude Children's Research Hospital

Nicole Miller
Vice President, Molecular Diagnostics, Ultragenyx

Peter Marks
Director, Center for Biologics Evaluation and Research, Food & Drug Administration (FDA)

Charlene Son Rigby
CEO, Global Genes

Abla Creasey
Vice President Therapeutics Development, California Institute for Regenerative Medicine

Matthew Taylor
Professor and Director of Adult Medical Genetics Program, University of Colorado

Lisa M. Kahlman
Executive Director, Public Policy & Public Affairs, Ultragenyx

Jerry Vockley
Director of the Center for Rare Disease Therapy, University of Pittsburgh School of Medicine and UPMC Children's Hospital of Pittsburgh
Cleveland Family Endowed Professor of Pediatric Research, Chief of Genetic and Genomic Medicine

Maria T. Millan
President and CEO, California Institute for Regenerative Medicine (CIRM)

Sharon Terry
President & CEO, Genetic Alliance

Priya Kishnani
Director, Duke Health Rare Disease Center at Duke University

2023 Sponsors

PLATINUM SPONSORS:
• Boehringer Ingelheim
• Ultragenyx

SILVER SPONSORS:
• Global Genes
• Rare Revolution