Below are some upcoming events that may be of interest. If you would like to have your event added to the list, please contact patientadvocacy@ultragenyx.com.

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September 2019

Newborn Screening Awareness Month

September 1 - September 30

In September, organizations across the country raise awareness about the importance of screening newborns for potential illnesses or genetic disorders. Learn more about newborn screening here: http://www.babysfirsttest.org/

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International Network for Fatty Acid Oxidation Research and Management (INFORM) Symposium 2019

September 1 - September 2
Amsterdam, Netherlands

As the only symposium of its kind in the world, INFORM gives clinicians and researchers the opportunity to promote research and discussion into the cause, diagnosis, and management of inborn…

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11th Annual Rare Disease Scientific Workshop: Science of Small Trials in the Age of Biological Plausibility

September 5
Washington, D.C.

The EveryLife Foundation for Rare Diseases will convene its 11th Annual Rare Disease Scientific Workshop to facilitate and help guide improvements in the development process for rare disease treatments. The…

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2019 PCORI Annual Meeting

September 18 - September 20
Washington, D.C.

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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RARE Patient Advocacy Summit

September 18 - September 20
San Diego, CA

Global Genes’ RARE Patient Advocacy Summit brings patients, caregivers and advocates together to share best practices, create important introductions, and help catalyze powerful collaborations. It offers many unique opportunities to…

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Association for Glycogen Storage Disease Patient/Family/Medical Conference

September 20 - September 21
Houston, TX

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 2019 Annual Meeting

September 20 - September 23
Orlando, FL

Discover the latest in bone, mineral and musculoskeletal research and learn about new opportunities for collaboration at the ASBMR 2019 Annual Meeting! Join over 3,000 bone, mineral and musculoskeletal scientists…

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XLH Network Regional Meetup

September 28
Columbus, OH

Do you live in or near Columbus, Ohio? Join the XLH Network for a regional meetup! They are also looking for local volunteers to help with planning the event. If…

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October 2019

CISCRP’s AWARE for All – Newark

October 3
Newark, NJ

On October 3, 2019 in Newark, NJ, local community members, patients, and research professionals will come together to learn about clinical research, get free health screenings, and hear from physician…

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XLH Network Regional Meetup

October 12
Birmingham, AL

Do you live in or near Birmingham, AL? Join the XLH Network for a regional meetup! They are also looking for local volunteers to help with planning the event. If…

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