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 2020

Organization for Rare Diseases India (ORDI) Racefor7

February 29 - June 30

Racefor7 is a 7000-meter walk/run for the cause of over 350 million patients with rare diseases. The number 7 symbolizes the 7000 rare diseases with 7000 people walking/running for 7000…

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June 2020

BIO International Convention

June 8 - June 12

For 2020, the BIO International Convention will transition to a new, virtual event format, BIO Digital. This virtual gathering of the global biotech industry provides access to key partners via…

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Global Genes RARE Drug Development Symposium

June 11 - June 12
Philadelphia, PA

Global Genes, in partnership with the Orphan Disease Center at the University of Pennsylvania School of Medicine, hosts the annual RARE Drug Development Symposium designed to connect, educate and inspire…

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7th Annual Million Dollar Bike Ride

June 13

Due to the recent COVID-19 outbreak, and social distancing recommendations, the Orphan Disease Center (ODC) will hold a VIRTUAL bike ride. The ODC will continue to register cyclists for the…

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DIA 2020 Global Annual Meeting

June 14 - June 18
Washington, D.C.

Fueled by the ideas of more than 7000 attendees, the DIA 2020 Global Annual Meeting will bring together patients, industry, regulators, and academia from all angles of the product lifecycle,…

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CISCRP Medical Heroes Appreciation 5K Run & Walk

June 15
Washington, D.C.

The Medical Heroes Appreciation 5K Run & Walk will take place in Washington, D.C. to celebrate study volunteers who give the gift of participation in clinical research. This event will…

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Worldwide CDKL5 Awareness Day

June 17

Each June, we work to educate and raise awareness about CDKL5 Deficiency Disorder. June has special meaning to the CDKL5 community, and June 17th is Worldwide CDKL5 Awareness Day.

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RARE on the Road

June 23 - June 24

RARE on the Road is a rare disease leadership series hosted by Global Genes and the EveryLife Foundation for Rare Diseases, providing critical education and insight into the rare disease…

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XLH Awareness Day

June 23

June 23 is the second annual 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…

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Our Odyssey Boston Meet-Up

June 25
Boston, MA

As a young adult, do you feel like your health needs are often overlooked by the health community? Come meet, network, and connect with other young adults who are facing…

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