Register Now for Rare Disease Day Programs

Both EURORDIS and the U.S. National Institutes of Health are offering virtual events in February that highlight research and celebrate heroes in patient advocacy.

By Debra Moffitt 26 Jan 2022

For the second year in a row, Rare Disease Day events are mainly a virtual affair due to the ongoing pandemic.

Search the full event list at the Rare Disease Day website.

Here are two dates to save and information about how to register:

February 8 - EURORDIS 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.

Also this year, EURORDIS is awarding its first prize for social media. The finalists include caregivers and patients with strong presences on Instagram. You can vote at the Black Pearl awards page.

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My Baby Noa

Noah Higón Bellver

February 28 – 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. This year’s virtual event will include speakers and panels about caregiver resilience, telehealth, personalized medicine and diversity in rare disease research. The event begins at 10 a.m. EST.