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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June 2019

Global Genes RARE Drug Development Symposium

June 6 - June 7

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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XLH Network Regional Meetup

June 8
Denver, CO

Do you live in or near Denver, CO? 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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Living Rare, Living Stronger NORD Patient & Family Forum

June 21 - June 23
Houston, TX

Join NORD this June in Houston, TX for a very special gathering! The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will bring the rare community together with…

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NORD Rare Impact Awards

June 22
Houston, TX

Each year NORD honors clinicians, researchers, patient advocates, and others who have made outstanding contributions to improving the lives of people with rare diseases. More information on the agenda, speakers…

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DIA 2019 Global Annual Meeting

June 23 - June 27
San Diego, CA

The goal of the DIA 2019 Global Annual Meeting is to provide you and your team with a rare opportunity to build on what you already know in the development…

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CISCRP Medical Heroes Appreciation 5K Run & Walk

June 24
San Diego, CA

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

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July 2019

Fatty Oxidation Disorders (FOD) Awareness Month

July 1 - July 31

July is Fatty Oxidation Disorders Awareness Month. FOD Family Support Group takes the lead in honoring people living with FODs and raising awareness of these disorders.

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RARE on the Road Session #4

July 13
Sioux Falls, SD

RARE on the Road brings critical education and insights to rare disease patients, advocates and caregivers, while collaborating in an interactive and engaging environment. These regional events provide patients and…

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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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