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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June 2021

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

The MAGIC Foundation’s 27th Annual Convention

July 15 - July 18

Details coming soon!

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Rare Disease Week on Capitol Hill

July 19 - July 22

Rare Disease Week on Capitol Hill, hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is designed to educate and activate advocates…

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September 2021

Newborn Screening Awareness Month

September 1

In September, organizations across the country raise awareness about the importance of screening newborns for potential illnesses and genetic disorders.

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Association for Glycogen Storage Disease Patient/Family/Medical Conference

September 10 - September 11

The Association for Glycogen Storage Disease holds a family/medical conference each year for those affected with GSD, their families, and medical professionals involved in treatment or research of any type…

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Mitochondrial Disease Awareness Week

September 13 - September 18

During the third week of September, the Mito community comes together to raise awareness for Mitochondrial Disease Awareness Week. Thousands of families face the reality of living with mitochondrial disease.…

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RARE Patient Advocacy (un)Summit

September 14 - September 25

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Due to the COVID-19 pandemic, and the…

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