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Planning a Virtual Rare Disease Day

Rare disease advocates will log on this year to keep the cause front and center.

illustration of 16 people on a Zoom call

Instead of in-person celebrations and conferences, many rare disease advocates will gather virtually across the globe this year to observe Rare Disease Day, which is February 28.

The bad news is that people can’t gather in person, but the good news is several Rare Disease Day events will be livestreamed and available no matter where you live. Here are some dates to save and information about how to register:

February 23 – RARE 2030 Recommendations for Europe

Many patients, health care experts and others have been working on Rare 2030, a forward-looking study designed to guide European policy for rare disease. As part of Rare Disease Day events, the partners in the study will release recommendations and share them with the EU Parliament.

Register for Rare 2030

February 24 - EURODIS Black Pearl Awards

European rare disease advocacy group, EURORDIS, will livestream its Black Pearl Awards honoring those who have made outstanding contributions to the rare disease community.

Register for the Black Pearl Awards

March 1 – Rare Disease Day at the U.S. National Institutes of Health

The National Center for Advancing Translational Sciences and the NIH Clinical Center annually invite rare disease researchers and patients to join together for a full day of presentations and discussions at the NIH campus in Bethesda, Maryland. This year’s virtual event will include interactive panel discussions and TED-style talks to share the latest research and give patients a platform to share their stories. The event begins at 10:30 EST.

Register for Rare Disease Day at NIH

March 5 - Rare Disease Day at the U.S. Food and Drug Administration

The FDA will hold a virtual public meeting to "highlight strategies to support rare disease product development." The agency invites patients, patient advocates, researchers and medical product developers to attend. Topics will include patient engagement, natural history studies in rare disease product development and strategies to support the development of rare disease treatments during the COVID-19 pandemic.

Register for the FDA Public Meeting