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 patientadvocacy@ultragenyx.com.

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September 2020

Global Genes LIVE! A RARE Patient Advocacy (un)Summit

September 14 - September 25

This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming.…

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October 2020

Rare Diseases and Orphan Products Breakthrough Summit

October 8 - October 9
Washington, D.C.

NORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest and most meaningful multi-stakeholder event of its kind – historically featuring over 20 speakers from the FDA, participation from…

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Virtual XLH Day 2020

October 10

The XLH Network will host Virtual XLH Day to connect XLH-affected individuals, their families, and the broader medical community.

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MPS Race for a Cure

October 11
Napa, CA

The National MPS Society will host a timed 5K Run and Memorial Walk. Registration for the race begins at 7:30am. Start time is 10:00 am for the 5k run. The…

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Rare New England Conference 2020

October 24
Hartford, CT

Save the date for the Rare New England Conference 2020! This year’s theme is “Improving Health Care Experiences in the Rare Disease Community,” and topics will include rare disease advocacy,…

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December 2020

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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