Past Event

COVID-19 & Rare Disease Patients

Nearly 1 in 10 Americans is living with a rare disease. 95 percent of these diseases currently lack an FDA-approved treatment.

For many of these patients, access to treatments and breakthrough developments from clinical trials can mean the difference between life and death. 

How has the pandemic impacted Americans living with rare diseases, particularly as clinical trials have been delayed?  How are the scientific and medical communities prioritizing rare disease research amid competing health concerns? What is Congress doing to address the disruption of these scientific discoveries for rare disease patients?

On February 24, join The Hill to explore what’s at stake for the nearly 30 million Americans with rare diseases and the critical scientific research landscape they rely on. 

 

Thursday, February 24, 2021
1:00PM ET/10:00AM PT

 

Speakers:

  • Rep. Josh Gottheimer (D-NJ), Co-Chair, Problem Solvers Caucus
  • Rep. Brad Wenstrup (R-OH), Co-Chair, GOP Doctors Caucus
  • Annie Kennedy, Chief of Policy, Advocacy and Patient Engagement, EveryLife Foundation for Rare Diseases
  • Paige Rivard, Chief Executive Officer, Prader-Willi Syndrome Association, USA
  • Mustafa Sahin, MD, PhD, Director, Translational Neuroscience Center, Boston Children’s Hospital

Sponsor Perspective:

  • Cate McCanless, Senior Vice President, Corporate Affairs and Policy, Harmony Biosciences
  • Maria Picone, Co-Founder and Chief Executive Officer, TREND Community​

Moderator:

  • Steve Clemons, Editor-at-Large, The Hill

 

Join the conversation! Tweet us: @TheHillEvents and #TheHillRareDiseases

 

SPONSOR:

 

 Alexion

 

At Harmony Biosciences, our goal is as much about delivering innovative therapies to help improve the lives of people with rare neurological diseases as it is about listening to them to discover what is often overlooked. By connecting empathy with science, we’re dedicated to addressing the primary and secondary disease symptoms that burden these communities. Learn more about our work with rare disease patients and organizations.

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