2021 Rare Disease Day

February 26, 2021 10:00 AM - 12:30 PM

Online Conference, Link will be sent in advance of the event.

Add to Calendar 2/26/2021 10:00:00 AM 2/26/2021 12:30:00 PM 2021 Rare Disease Day MassBio’s Rare Disease Day recognizes the research being done in Massachusetts to treat and cure rare disease. The last day of February has been designated as Rare Disease Day in Massachusetts to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.

This year’s program will focus on how we can better address health inequity and racial disparities among the rare disease community. Attendees will hear an inspiring Possible Talk, an insightful panel of industry, physicians, patients/caregivers, and advocates, and a closing patient keynote. Ample networking time will be provided (virtually!).

Alone we are rare, together we are strong. 

To inquire about sponsorship opportunities, contact Laura Rudberg.

NOTE: MassBio makes every effort to accommodate our entire community at each of our events. Please let us know at least 3 days in advance of the event if you require special accommodations, such as captioning. Online Conference, Link will be sent in advance of the event.
Session Title Start Time End Time
Welcome Networking Session
2/26/2021 10:00 AM 2/26/2021 10:30 AM
Possible Talk: Partnering with Patients to Improve Drug Discovery
For years, patients and patient advocacy groups have expressed a disconnect between their firsthand experiences with their disease and the healthcare industry’s understanding of their disease. As the healthcare industry bases day-to-day care or new treatments on its understanding, real patient needs are often unmet: new drugs are developed with incremental improvements or ignore symptoms that impact quality of life. To stop this cycle and deliver transformational products, we must bring together physicians, regulators, scientists, and patients to interact across the drug discovery process. 		2/26/2021 10:30 AM 2/26/2021 10:45 AM
Panel: Addressing Health Inequity in Rare Disease Research
While the barriers to treatment and care are typically higher for rare diseases, they are even higher for people of color living with rare diseases. These disparities often start to take shape during the clinical research process for rare diseases, where racial and ethnic minorities are chronically underrepresented. During this panel, leaders in the biotech, pharma, and advocacy communities will examine the current state of rare disease research and discuss how the sector can counter longstanding health inequities. 		2/26/2021 10:45 AM 2/26/2021 11:15 AM
Networking Break
2/26/2021 11:15 AM 2/26/2021 11:40 AM
Adventures of a Hemophiliac: How Climbing Mt. Everest Taught Me About Inequality in Healthcare
Chris Bombardier is one of just a handful of people to have climbed the Seven Summits, the tallest mountain on each of the seven continents. While this is a remarkable feat on its own, Chris’ accomplishment is even more unparalleled – he is the first person with a bleeding disorder to complete the challenge. It was through these treks that Chris met individuals living with bleeding disorders, who – because of the countries they lived in – lacked access to care and life-preserving medications. Today, Chris has become an advocate for the global bleeding disorder community, inspiring others to reach new heights. 		2/26/2021 11:40 AM 2/26/2021 12:00 PM
Closing and Networking
2/26/2021 12:00 PM 2/26/2021 12:30 PM

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