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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February 2019

CCDS Awareness Day

February 1

February 1 is Cerebral Creatine Deficiency Syndrome Awareness Day! To find out how you can celebrate this day and help spread awareness of CCDS in your community, visit: https://creatineinfo.org/

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15th Annual WORLDSymposium

February 4 - February 8
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 12
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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EURORDIS Round Table of Companies

February 13 - February 14
Brussels, Belgium

An exceptional two-day event not to be missed! Attend to take part in discussions with patient advocates, policy makers, payers, HTA bodies, clinicians, healthcare industry executives and investors on how…

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Miami FSHD Family Day Conference

February 23
Miami, FL

Join the Facioscapulohumeral Dystrophy (FSHD) Society for the first-ever FSHD Family Day Conference in Florida, locally hosted by Mario Saporta, MD, PhD, MBA, and his team at the Neuromuscular Division…

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Rare Disease Week on Capitol Hill 2019

February 24 - February 28
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 28

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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March 2019

ENDO 2019

March 23 - March 26
New Orleans, LA

ENDO, hosted by the Endocrine Society, is the world’s largest event for presenting and obtaining the latest in endocrine science and medicine. With an extensive program covering a broad array…

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62nd Annual Ataxia Conference 2019

March 29 - March 30
Las Vegas, NV

The Annual Ataxia Conference (AAC) is the largest gathering of those affected by all forms of hereditary and sporadic Ataxia in the world. At AAC, attendees will have two days…

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RARE on the Road Session #1

March 30
Boston, MA

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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