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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February 2021

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

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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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

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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