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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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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10th Annual Rare Disease Scientific Workshop: Conceptualizing an FDA Rare Disease Center of Excellence

September 13
Willard Intercontinental Hote, 1401 Pennsylvania Ave NW
Washington, DC 20004 United States
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The EveryLife Foundation for Rare Diseases will convene its 10th Annual Rare Disease Scientific Workshop to explore the rapid pace of the biotechnology industry and the roadblocks experienced during the regulatory process.

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International Ataxia Awareness Day

September 25

Ataxia organizations around the world lead this international effort to increase awareness of ataxia, educate people about the disease and raise financial support for research. Find out more

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ASBMR 2018 Annual Meeting

September 28 - October 1
Montreal, QC Canada

Discover the latest in bone, mineral and musculoskeletal research and learn about new opportunities for collaboration at the ASBMR 2018 Annual Meeting! Join over 3,000 bone, mineral and musculoskeletal scientists…

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October 2018

RARE Patient Advocacy Summit

October 3 - October 5
Irvine CA United States

Global Genes’ RARE Patient Advocacy Summit brings patients, caregivers and advocates together to share best practices, create important introductions, and help catalyze powerful collaborations. Find out more

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Rare Diseases and Orphan Products Breakthrough Summit

October 15 - October 16
Washington DC United States

The NORD Rare Summit, which historically features more than 20 speakers from the FDA and more than 80 thought leaders from the patient community and industry, provides a unique opportunity…

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American Society of Nephrology Kidney Week Annual Meeting

October 23 - October 28
San Diego CA United States

Over the past 5 decades, ASN Kidney Week has served as a major forum for the dissemination of advances in basic, clinical, and translational research as well as advances in…

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2018 PCORI Annual Meeting

October 31 - November 2
Washington DC United States

At this year’s Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, members of the healthcare community will come together for updates on how scientists, patients, caregivers, clinicians, payers and others are…

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