Watch the event Friday, December 10, at 10am EST / 7am PST at The Hill on Rare Diseases: A discussion on Price Review. A summary of the topic and a list of speakers are provided below.
One in 10 Americans has the rare disease — 30 million Americans in need of treatment. According to the NIH, rare diseases affect less than 200,000 people in the United States at any one time. Since the passage of the Orphan Drug Act in 1983, progress has been made in researching and developing drugs for the 7,000 rare diseases that are now known by scientists, but many diseases still lack adequate treatment, preventing patients from finding new ones.
What are some of the barriers that pharmacists face when making orphan medicine? How can we promote new medical care at affordable rates? What can lawmakers do to improve the quality of life and care for all patients?
The Mountain brings together researchers, promoters, and more to discuss in detail the orphanage.
Friday, December 10, 2021
10:00 AM ET / 7: 00AM PT
- Rep. Larry Bucshon MD (R-IN), Member, Regional Committee for Energy and Commerce on Health
- Rep. Anna Eshoo (D-CA), Chair, Sub-Committee on Energy and Marketing on Health
- Dr. Ge Bai, Professor, Healthcare Policy & Management, Johns Hopkins Bloomberg School of Public Health
- Tammy Boyd, JD MPH, Chief Policy Officer and Counsel, Rare Disease Diversity Coalition
- Annie Kennedy, Chief of Policy, Advocacy, & Patient Engagement, EveryLife Foundation for Rare Diseases
- Kelly Maynard, President, Little Hercules Foundation
- Dr. Brett McQueen, Director, Center for Pharmaceutical Value, University of Colorado
- Debra Regier, MD, Medical Director, Rare Disease Institute, Children’s National Hospital
- Dr. Jason Shafrin, Founder, Editor, and General Secretary, Healthcare Economist; Senior Managing Director, Center for Healthcare Economics and Policy, FTI Consulting