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
Patient Ambassador, GBSCDA
Carissa Juarez was born and raised in Boston, Massachusetts. Prior to making the decision to stay home with her daughter Jalyssa, who is 8yrs old and has sickle cell disease, Carissa was employed at the Department of Transitional Assistance as a Social Worker. Carissa decided to leave her position due to Jalyssa’s frequent hospitalizations and to better care for her daughter. Throughout the years, she was faced with many questions from the school and others about Jalyssa’s health, such as, what is SCD? Why does your daughter look so good and doesn’t look sick? Or why isn’t she crying if she is in so much pain? After hearing these questions and comments she decided to learn more about SCD.

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