Past Event

Rare Disease Day:  A Look at 40 Years of the Orphan Drug Act 

This year marks the 40th anniversary of the Orphan Drug Act, a piece of legislation that re-shaped research and development for rare disease drugs through several incentives such as market exclusivity. What progress has been made since its passage? And what steps can Congress continue to take to ensure the best health outcomes for patients with rare diseases? 

The Hill will take a look back into history to shine light on what still can be done to move forward on rare disease drug policy. 

The National Press Club, The Holeman Lounge
529 14th St NW, Washington, DC 20045

Tuesday, February 28, 2023
10:00 AM – Breakfast & Networking
10:30 AM – Programming Begins
12:00 PM – Programming Concludes


  • Rep. Mariannette Miller-Meeks (R-IA), Member, Rare Disease Caucus
  • Thomas Crawford, MD, Co-Director, Muscular Dystrophy Association Clinic, Johns Hopkins Medicine; Pediatric Neurologist, Johns Hopkins Children’s Center  
  • Donna R. Cryer, JD, Founder & CEO, Global Liver Institute
  • Dr. Hilary Marston, Chief Medical Officer, Food and Drug Administration
  • Heidi Ross, VP, Policy & Regulatory Affairs, National Organization for Rare Disorders (NORD)
  • Frank Sasinowski, JD, Director, Hyman, Phelps, and McNamara 


  • Christina Hochul, Senior Director, Head of Strategic Alliance Development, Alexion, AstraZeneca Rare Disease
  • Julia Jenkins, Executive Director, Everylife Foundation for Rare Diseases


  • Bob Cusack, Editor in Chief, The Hill

Join the conversation! Tweet us: @TheHillEvents using #TheHillRareDisease


To transform the lives of people affected by rare diseases and devastating conditions by continuously innovating and creating meaningful value in all that we do. And we’re making real progress, every day.


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