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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May 2021

International MPS Awareness Day

May 15

Every year on May 15, the mucopolysaccharidosis (MPS) and mucolipidosis (ML) community comes together to recognize those diagnosed, think about the loved ones who have been lost, thank doctors and…

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National MPS Society Maritime Gala

May 15

Join the National MPS Society for an evening of intrigue and philanthropy at the historic Corinthian Yacht Club in Tiburon, CA, founded in 1886. This event will feature silent and…

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June 2021

MitoAction FAOD Monthly Support Call

June 10

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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Worldwide CDKL5 Awareness Day

June 17

Each June, the CDKL5 community works to educate and raise awareness about the disorder. June has special meaning to the CDKL5 community, and June 17 is Worldwide CDKL5 Awareness Day.

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XLH Awareness Day

June 23

June 23 is X-linked hypophosphatemia (XLH) Awareness Day. Each year, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong.

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35th Annual National MPS Society Nashville Family Conference

June 24 - June 26

The National MPS Society invites you to attend its 35th Annual Family Conference. The conference will be held at Sheraton Music City Hotel in Nashville, Tennessee.

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National Rock and Roll 5K Run and 1-Mile Walk

June 26

The National MPS Society will host a 5K Run and 1-mile walk in conjunction with the 2021 family conference in Nashville, TN. Registration for the race is available before and…

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2021 CCDS Scientific + Patient Symposium

June 26 - June 29

This conference is intended for members of the scientific and medical community, as well as the Cerebral Creatine Deficiency Syndromes (CCDS) patient and family community. Professionals will learn from families…

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DIA 2021 Global Annual Meeting

June 27 - July 1

The DIA 2021 Global Annual Meeting brings together thousands of innovators from around the globe to discuss updates in the ever-changing field of life sciences.

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July 2021

MitoAction FAOD Monthly Support Call

July 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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