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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August 2020

NUCDF Virtual Cure the Cycle Challenge

August 16, 2020

On August 16, 2020 Cure the Cycle Challenge Riders will cycle 35, 50, 65, 80 or 100 miles virtually to raise awareness and funds to benefit the National Urea Cycle…

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September 2020

Newborn Screening Awareness Month

September 1, 2020

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

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Association for Glycogen Storage Disease Patient/Family/Medical Conference

September 11, 2020 - September 12, 2020
Cleveland, OH

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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ASBMR 2020 Virtual Annual Meeting

September 11, 2020 - September 15, 2020

Join thousands of bone and mineral scientists to explore the latest science in the field of bone and mineral research. To ensure the safety, health and well-being of meeting attendees,…

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Connecting Families UCD Foundation Family Camp

September 11, 2020 - September 12, 2020

Connecting Families UCD Foundation hosts annual camps for families affected by urea cycle disorders. UCD Family Camps are held in different locations across the US so families around the country…

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National MPS Society 34th Annual Family Conference Webinar

September 12, 2020

The 34th Annual Family Conference, hosted by the National MPS Society, will be presented on September 12. This virtual webinar will encompass both family support and research modules. There will…

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Global Genes LIVE! A RARE Patient Advocacy (un)Summit

September 14, 2020 - September 25, 2020

This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming.…

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12th Annual Rare Disease Scientific Workshop

September 15, 2020
Washington, D.C.

The EveryLife Foundation for Rare Diseases will convene its 12th Annual Rare Disease Scientific Workshop to facilitate and help guide improvements in the development process for rare disease treatments. The…

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2020 PCORI Annual Meeting

September 16, 2020 - September 17, 2020
Arlington, VA

At this year’s Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, members of the healthcare community will come together for updates on how scientists, patients, caregivers, clinicians, payers, and others are…

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October 2020

Rare Diseases and Orphan Products Breakthrough Summit

October 8, 2020 - October 9, 2020
Washington, D.C.

NORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest and most meaningful multi-stakeholder event of its kind – historically featuring over 20 speakers from the FDA, participation from…

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