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 2018

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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2018 FOD/OAA International Metabolic Conference

July 6 - July 7
Bloomington MN United States

This year the International Metabolic Conference, hosted by the FOD Family Support Group and the Organic Acidemia Association, will be held in Bloomington, MN at the Embassy Suites Minneapolis Airport.…

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RARE on the Road Session #3

July 21
Nashville TN 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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August 2018

15th International Symposium on MPS and Related Diseases

August 2 - August 4
San Diego CA United States

Every other year, this symposium is presented and hosted in a new country. This year, the event will be held in the United States, and offers an exclusive opportunity for…

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September 2018

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

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Dystonia Awareness Month

September 1 - September 30

September is Dystonia Awareness Month, during which organizations seek to raise awareness about dystonia and join efforts to make a difference for the entire community.

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International Network for Fatty Acid Oxidation Research and Management (INFORM) Symposium 2018

September 2 - September 3
Athens Greece

Last year’s INFORM symposium had more than 110 representatives from 22 countries. This year, we’re looking forward to another great turnout, with engaging scientific and clinical presentations, plenary talks, grand…

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