2022 Rare Disease Day

February 28, 2022 10:00 AM - 12:30 PM

MassBioHub & Virtual, 700 Technology Sq Fl 5 Cambridge MA 02139

Add to Calendar 2/28/2022 10:00:00 AM 2/28/2022 12:30:00 PM 2022 Rare Disease Day MassBio recognizes Rare Disease Day by highlighting the research to treat and cure rare diseases happening in Massachusetts. The last day of February has been designated as Rare Disease Day worldwide to raise awareness about 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, along with a closing patient keynote. Ample networking time will be provided (virtually, too!).

Alone we are rare, together we are strong.® (This slogan is a registered trademark of the National Organization for Rare Disorders.)

To inquire about sponsorship opportunities, contact Laura Rudberg.

Please note that this will be a hybrid event, with a limited number of in-person attendees. In-person attendance is available on a first-come, first-served basis, and all additional registrants will be placed on a waitlist. All in-person attendees are required to be fully vaccinated and masks will be required in all common areas of the event space, except while eating or drinking.  

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. MassBioHub & Virtual, 700 Technology Sq Fl 5 Cambridge MA 02139
Beta Thalassemia Patient and Parent
Tracy Antonelli is a graduate of Simmons College and the Boston University School of Public Health. Tracy was a clinical researcher at New England Research Institutes and Boston Children’s Hospital. She contributed to numerous groundbreaking studies, including the Stroke Prevention Trial in Sickle Cell Anemia. Tracy’s work has been published in The New England Journal of Medicine. Tracy became a stay at home Mom in 2012, when she and husband Patrick Mooty adopted their first daughter (Emmie) from China. They have since adopted daughters Rosie and Frannie from China. Tracy, Emmie, Rosie and Frannie have transfusion-dependent thalassemia. All of them need blood transfusions every 3 weeks and daily chelation therapy. Tracy is a Board Member for the Cooley’s Anemia Foundation and a frequent patient speaker for Harvard Medical School. She advocates for blood donation and volunteers for Boston Children’s Hospital. Emmie, Rosie and Frannie are Children’s Miracle Network Hospitals Champions for 2022. While living with a chronic blood disorder is a big part of their lives, they are an active and fun-loving family, thriving with thalassemia.

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