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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December 2019

FAST Global Summit & Gala

December 6, 2019 - December 7, 2019
Chicago, IL

The FAST Global Summit & Gala draws more than 1,200 attendees from around the world. The annual event features a science summit, educational workshops and an AAC carnival, and the…

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33rd Annual National MPS Society Family Conference

December 19, 2019 - December 21, 2019
Orlando, FL

The National MPS Society invites you to attend its 33rd Annual Family Conference and celebrate the Society’s 45 years of achievements. The conference will be held at Hilton Orlando Lake…

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January 2020

RARE in the Square

January 13 - January 15
San Francisco, CA

Set in San Francisco’s Union Square, and coinciding with J.P. Morgan’s annual Healthcare Conference, RARE in the Square is a unique networking event that assembles investors, industry partners, patient community…

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February 2020

CCDS Awareness Day

February 1

February 1 is Cerebral Creatine Deficiency Syndrome Awareness Day! Find out how you can celebrate this day and help spread awareness of CCDS in your community.

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16th Annual WORLDSymposium

February 10 - February 13
Orlando, FL

WORLDSymposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases…

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International Angelman Day

February 15

The purpose of this day is to: Raise awareness worldwide of the condition Mobilize people to action & encourage fundraising for the individual organization in their country Promote research and…

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EURORDIS Black Pearl Awards

February 18
Brussels, Belgium

The EURORDIS Black Pearl Awards is an annual event held in Brussels to recognize the outstanding achievements and exceptional work of people making a difference for the rare disease community.…

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EURORDIS Round Table of Companies

February 19
Brussels, Belgium

The EURORDIS Round Table of Companies (ERTC) fosters an educational relationship and a constructive dialogue between EURORDIS and companies addressing rare diseases. Since its inception 20 years ago, EURORDIS has…

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Rare Disease Week on Capitol Hill 2020

February 25 - February 28
Washington, D.C.

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique…

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Patient Group Leader Workshop

February 25
Washington, D.C.

This workshop, for patient organization leaders, will give you a chance to explore resources designed to educate your disease communities about cell and gene medicine.

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