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 2020

FSHD Connect Conference

June 27 - June 28
Washington, D.C.

The annual FSHD conference is a gathering of patients, families, researchers, and healthcare providers.

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July 2020

Living Rare, Living Stronger NORD Patient & Family Forum

July 18 - July 20
Cleveland, OH

NORD is headed to Cleveland, Ohio for our 2020 Living Rare, Living Stronger Patient and Family Forum. What’s even more exciting–the Rare Impact Awards, included in this event, will be…

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International Metabolic Conference

July 24 - July 26
Pittsburgh, PA

MitoAction and the Organic Acidemia Association (OAA) will be co-hosting the 2020 International Metabolic Conference free of charge for parents, affected individuals, family members, and friends. Professionals are also invited…

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2020 CCDS Scientific + Patient Symposium

July 30 - August 2
Park City, UT

Hosted by the Association for Creatine Deficiencies (ACD), this conference is intended for members of the scientific and medical community, as well as the Cerebral Creatine Deficiency Syndromes (CCDS) patient…

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August 2020

Our Odyssey NYC Meet-Up

August 13
New York, NY

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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September 2020

Newborn Screening Awareness Month

September 1

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 - September 12
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 Annual Meeting

September 11 - September 14
Seattle, WA

Join thousands of bone and mineral scientists for four days packed with networking and educational opportunities, all under one roof at the Palais des congrès de Montréal. With more than…

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12th Annual Rare Disease Scientific Workshop

September 15
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 - September 17
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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