Check out this Friday (December 10) at 10 AM Eastern Standard Time / 7 AM Pacific Standard Time at The Hill Rare Diseases: A Dialogue on Value EvaluationThe summary of the subject and the list of speakers are as follows.

One in ten Americans has a rare disease—that is, 30 million Americans need treatment. According to the National Institutes of Health, a rare disease is a disease that affects less than 200,000 people in the United States at any given time. Since the passage of the Orphan Drug Act in 1983, the research and development of drugs for the 7,000 rare diseases currently identified by scientists has made progress, but many diseases still lack adequate treatment methods, preventing patients from obtaining new and innovative drugs.

What unique obstacles do drug manufacturers face when developing orphan drugs? How can we encourage new breakthrough treatments at a price that patients can afford? What can policymakers do to increase innovation and access to orphan drugs for all patients?

Hill will bring together researchers, advocates, and more people for a comprehensive discussion of orphan drugs.

Friday, December 10, 2021
10:00 AM Eastern Time / 7:00 AM Pacific Time

Speaker:

• Representative Larry Bucshon MD (R-IN), Member, Energy and Business Health Subcommittee
• Representative Anna Eshoo (D-CA), Chairman of the Energy and Business Health Subcommittee
• Dr. Ge Bai, Professor of Health Care Policy and Management, Bloomberg School of Public Health, Johns Hopkins University
• Tammy Boyd, JD MPH, Chief Policy Officer and Advisor, Rare Disease Diversity Alliance
• Annie Kennedy, Director of Policy, Advocacy and Patient Engagement, EveryLife Rare Disease Foundation
• Kelly Maynard, Chairman of the Little Hercules Foundation
• Dr. Brett McQueen, Director of the Center for Pharmaceutical Value, University of Colorado
• Debra Regill, MD, Medical Director, Rare Disease Research Institute, National Children’s Hospital
• Dr. Jason Shafrin, Founder, editor and lead writer, healthcare economist; senior managing director of FTI Consulting Healthcare Economics and Policy Center

Register here.