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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December 2019

33rd Annual National MPS Society Family Conference

December 19 - December 21
Orlando, FL

The National MPS Society invites you to attend its 33rd Annual Family Conference and celebrate the Society’s 45 years of achievements. The conference will be held at Hilton Orlando Lake…

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January 2020

RARE in the Square

January 13, 2020 - January 15, 2020
San Francisco, CA

Set in San Francisco’s Union Square, and coinciding with J.P. Morgan’s annual Healthcare Conference, RARE in the Square is a unique networking event that assembles investors, industry partners, patient community…

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February 2020

CCDS Awareness Day

February 1, 2020

February 1 is Cerebral Creatine Deficiency Syndrome Awareness Day! Find out how you can celebrate this day and help spread awareness of CCDS in your community.

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16th Annual WORLDSymposium

February 10, 2020 - February 13, 2020
Orlando, FL

WORLDSymposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases…

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EURORDIS Black Pearl Awards

February 18, 2020
Brussels, Belgium

The EURORDIS Black Pearl Awards is an annual event held in Brussels to recognize the outstanding achievements and exceptional work of people making a difference for the rare disease community.…

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Rare Disease Week on Capitol Hill 2020

February 25, 2020 - February 28, 2020
Washington, D.C.

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique…

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Rare Disease Day

February 29, 2020

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers…

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Organization for Rare Diseases India (ORDI) Racefor7

February 29, 2020 - June 30, 2020

Racefor7 is a 7000-meter walk/run for the cause of over 350 million patients with rare diseases. The number 7 symbolizes the 7000 rare diseases with 7000 people walking/running for 7000…

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March 2020

2020 Annual Ataxia Conference

March 6, 2020 - March 7, 2020
Denver, CO

As interest from the pharmaceutical industry in developing drugs to treat Ataxia continues to grow, we at the National Ataxia Foundation believe that collaboration among researchers, clinicians, pharmaceutical companies, and…

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2020 MDA Clinical & Scientific Conference

March 21, 2020 - March 25, 2020
Orlando, FL

2020 marks the 70th anniversary of the Muscular Dystrophy Association (MDA), the umbrella association transforming the lives of people affected by muscular dystrophy, amyotrophic lateral sclerosis (ALS), and related neuromuscular…

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