As the nation gets ready for Rare Disease Day on February 28, 2022, PWSA | USA CEO Paige Rivard will participate in a national webinar hosted by Harmony Biosciences on Thursday, February 24th at 1pm EST to discuss COVID-19 and Rare Disease Patients. Paige will join U.S. Representative Josh Gottheimer (D-NJ), U.S. Representative Brad Wenstrup (R-OH), Annie Kennedy, Chief of Policy, Advocacy and Patient Engagement, EveryLife Foundation for Rare Diseases, and Mustafa Sahin, MD, PhD, Director, Translational Neuroscience Center, Boston Children’s Hospital, along with sponsor perspective participants Cate McCanless, Senior Vice President, Corporate Affairs and Policy, Harmony Biosciences and Maria Picone, Co-Founder and Chief Executive Officer, TREND Community, and moderator Steve Clemons, Editor-at-Large, The Hill. The following questions will be addressed during this webinar:
- 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?
If you are interested in joining, please click the button below to learn more and register.