MassBio® 2021 Rare Disease Day to Address Health Inequities in the Rare Disease Community

Feb 17, 2021

In addition to highlighting the latest research in Massachusetts, this year’s event will focus on combatting racial and ethnic disparities across the rare disease field

What: MassBio will host a 2021 Rare Disease Day event to call attention to the public health issues associated with rare diseases, which impact roughly 1 in 20 people. This year, the agenda will focus on addressing racial and ethnic disparities in rare disease diagnosis, treatment, and care. The event will feature industry leaders, physicians, patients, caregivers, and patient advocates who will discuss these issues through a Possible Talk®, panel discussion, and keynote.

The event will also include a free screening of keynote speaker Chris Bombardier’s groundbreaking documentary, Bombardier Blood, which follows Chris – who has hemophilia – as he takes on the tallest mountain on each continent. The screening will take place at 4 pm via the event platform.

When: February 26, 2021, 10 a.m. to 12:30 p.m.

Where: This event will be held virtually. The link to access the event platform will be sent to attendees the week of the event. 

Who: MassBio President and COO Kendalle Burlin O’Connell will deliver welcome remarks and will be joined by:

  • Patient keynote, Chris Bombardier, Executive Director, Save One Life, and the and the first person with hemophilia to successfully climb the Seven Summits
  • Chrystal Louis, MD, MPH, Vice President, Head of Medical Affairs, CRISPR Therapeutics; Desiree Jones-Devonish, Senior Director Clinical Operations, Biogen; Heather Dean, Vice President, Hematology Franchise Head; and Shamonica Wiggins, Sickle Cell Patient & Social Media Manager, Sickle Cell Community Consortium, who will participate in a panel discussion on health equity in rare disease research
  • Domi Stickens, Senior Director, Head of Translational Sciences at Mitobridge, Inc., an Astellas Company, who will deliver a Possible Talk on patient-centric drug discovery

View the agenda, here.

Interested media can register for free by contacting Caroline Pepek.

Sponsors of the event include: Agios, Alexion, Astellas, Biogen, bluebird bio, Blueprint Medicines, Definitive Healthcare, Fujifilm Diosynth Biotechnologies, Homology Medicines, Ipsen, Pfizer, PTC Therapeutics, Saniona, Takeda, Ultragenyx, Uniqure, Vertex, and Voyager Therapeutics.

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