News Releases

WHAT: 

Join the National Organization for Rare Disorders (NORD) Oct. 15-17, 2023 in Washington for the
Rare Diseases and Orphan Products Breakthrough Summit. This event brings together rare
disease advocates, experts, and stakeholders in the United States and around the world to
tackle the most pressing issues facing America's rare disease community.

The two-day event will focus on critical topics faced in diagnosing and finding treatments for
more than 7,000 rare diseases that impact 1 in 10 Americans. Topics range from; the impact of
the Inflation Reduction Act, the new frontier of gene editing, harnessing the power of AI,
equitable access to care, mental health needs and more.

WHO:

-Peter Saltonstall, President and Chief Executive Officer, NORD

-Robert Califf, MD, Commissioner, U.S. Food and Drug Administration

Special CEO Perspectives Panel: Outlook for Rare Diseases and Orphan Products

-R. Duane Clark, General Manager, U.S. Rare Diseases, Sanofi

-Eric Dube, Ph.D., President and Chief Executive Officer, Travere

-Myrtle Potter, President and Chief Executive Officer, Sumitomo Pharma America

-Brigette Roberts, M.D., OrphAI Therapeutics

-Stephen Uden, M.D., Co-Founder and Chief Executive Officer, Rallybio

WHEN/WHERE:

Oct. 16-17, 2023, Marriot Marquis, Washington

Livestream is available upon request

WHY:

Rare disease is a public health challenge. From small towns to large cities, more than 30 million
Americans have a rare disease. Half are children, of which one in three will die before their fifth
birthday. Diagnosis can take five years or more and overall medical costs are three to five times
higher than non-rare diseases. Patients with rare disease incur nearly half of all healthcare costs
 in the U.S. (Sources: https://ncats.nih.gov/files/NCATS_RareDiseasesFactSheet.pdf, 
https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-022-01026-w).