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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April 2018

Dystonia Awareness Week

April 29 - May 7

Supported by The Dystonia Society, the purpose of Dystonia Awareness Week is to promote awareness of dystonia, undertake research, and support welfare initiatives. The Dystonia Society organizes various activities throughout…

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May 2018

Pediatric Endocrine Society Annual Meeting

May 5 - May 8
Toronto Canada

The Pediatric Endocrine Society (PES) Annual Meeting is a leading event for academic pediatrics and child health research. The mission of PES is to advance and promote the endocrine health…

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2018 Patient Advocacy Certificate Training (PACT)

May 9 - May 11
Sioux Falls, SD United States

A partnership between Sanford Research and Professional Patient Advocates in Life Sciences (PPALS) this event is a one-of-a-kind opportunity to learn the dos and don’ts of the professional patient advocacy…

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9th European Conference on Rare Diseases & Orphan Products

May 10 - May 12
Vienna Austria

“Rare Diseases 360° – collaborative strategies to leave no-one behind” is the overarching theme of the European Conference on Rare Diseases & Orphan Products (ECRD) 2018. This event facilitates policy…

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International MPS Awareness Day

May 15

May 15th is International MPS Awareness Day, a day that honors everyone in the MPS Community including patients, families, caregivers, researchers and physicians. Click here for more information

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June 2018

RARE on the Road Session #1

June 4
Houston TX United States

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

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2nd European Conference on Glut1 Deficiency

June 22 - June 23
East Grinstead West Sussex, United Kingdom

The 2nd European Conference on Glut1 Deficiency will take place in June at the Crowne Plaza Felbridge in the UK. This bi-annual program aims to increase knowledge and awareness of…

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CISCRP Medical Heroes Appreciation 5K Run & Walk

June 25
Boston MA United States

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

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RARE on the Road Session #2

June 30
Salt Lake City UT United States

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

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July 2018

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. Find out more

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