Event dates may change due to the evolving COVID-19 pandemic. We encourage you to check specific event websites for the most up-to-date status.

If you would like to have your event added to the list, please contact [email protected].

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September 2021

RARE Patient Advocacy (un)Summit

September 14 - September 25

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Due to the COVID-19 pandemic, and the…

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October 2021

Newborn Screening Bootcamp

October 2

The EveryLife Foundation for Rare Diseases and Expecting Health at Genetic Alliance invite you to a virtual five-part training series designed to educate and engage newborn screening stakeholders. Throughout the…

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MitoAction FAOD Monthly Support Call

October 14

Join MitoAction and call host, FAOD Mom Stephanie Harry, on the second Thursday of each month for a support call for families affected by fatty acid oxidation disorders (FAOD). This…

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Rare Disease Scientific Workshop

October 20

Details coming soon!

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November 2021

2021 PCORI Annual Meeting

November 17 - November 19

The 2021 PCORI Annual Meeting will feature keynotes, plenaries, and breakout sessions that highlight a range of timely and important topics around patient-centered research.

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December 2021

International Day of Persons with Disabilities

December 3

The United Nations’ day of international observance aims to promote an understanding of disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities. The term…

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10th Anniversary RareVoice Awards

December 7

Details coming soon!

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EveryLife Foundation Community Congress Annual Meeting

December 8

The Community Congress is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. The Congress is a strategic advisory council, providing advice and…

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