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 2020

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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February 2021

CCDS Awareness Day

February 1

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

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17th Annual WORLDSymposium

February 8 - February 12

WORLDSymposium will conduct the 2021 annual research conference virtually. WORLDSymposium Virtual 2021 will include many of the core elements of the in-person conference with new innovations that the virtual platform…

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MitoAction FAOD Monthly Support Call

February 11

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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International Angelman Day

February 15

The purpose of International Angelman Day is to raise awareness of the condition, mobilize people to action, encourage fundraising, promote research and educational resources, and remember those people with Angelman…

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Rare Across America

February 22 - March 5

Rare Disease Legislative Advocates (RDLA) staff will organize virtual meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The RDLA team will also help prepare…

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Rare Disease Day

February 28

Rare Disease Day takes place on the last day of February every year. The main objective of the day is to raise awareness among decisionmakers and the general public about…

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March 2021

MitoAction FAOD Monthly Support Call

March 11

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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2021 MDA Clinical & Scientific Conference

March 15 - March 18

The 2021 MDA Virtual Clinical & Scientific Conference will take place March 15-18, in an all-virtual environment, which will include scheduled live-broadcast sessions, on-demand videos, virtual networking sessions, exhibits, and…

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April 2021

MitoAction FAOD Monthly Support Call

April 8

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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