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

12th Annual Rare Disease Scientific Workshop

September 15, 2020
Washington, D.C.

The EveryLife Foundation for Rare Diseases will convene its 12th Annual Rare Disease Scientific Workshop to facilitate and help guide improvements in the development process for rare disease treatments. The…

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2020 PCORI Annual Meeting

September 16, 2020 - September 17, 2020
Arlington, VA

At this year’s Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, members of the healthcare community will come together for updates on how scientists, patients, caregivers, clinicians, payers, and others are…

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October 2020

Rare Diseases and Orphan Products Breakthrough Summit

October 8, 2020 - October 9, 2020
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, 2020

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, 2020
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, 2020
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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BIO Patient and Health Advocacy Digital Summit

October 28, 2020 - October 29, 2020

The BIO Patient and Health Advocacy Digital Summit is a virtual event that will bring together patient advocacy organizations, academia, regulators, the biotechnology industry, and other stakeholders for robust programming.…

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December 2020

International Day of Persons with Disabilities

December 3, 2020

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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Wilson Disease Association Conference

December 4, 2020 - December 6, 2020

Save the dates December 4, 5, and 6, 2020! The Wilson Disease Association is hosting their first virtual conference. There will be presentations on a range of topics for patients…

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GSD Community Update Webinar

December 8, 2020

Join Ultragenyx, in partnership with the Association for Glycogen Storage Disease (AGSD) and The Children's Fund for Glycogen Storage Disease Research, on Dec. 8, 2020 at 7:00 p.m. ET for…

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