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January 2019

RARE in the Square

January 7, 2019 - January 9, 2019
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 2019

CCDS Awareness Day

February 1, 2019

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:

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15th Annual WORLDSymposium

February 4, 2019
San Diego, CA

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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Miami FSHD Family Day Conference

February 23, 2019
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, 2019 - February 28, 2019
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, 2019

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, 2019 - March 26, 2019
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, 2019 - March 30, 2019
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, 2019
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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XLH Network Regional Meetup

March 30, 2019
Columbus, OH

Do you live in or near Ohio? Join the XLH Network for their first regional meetup of 2019! They are also looking for local volunteers to help with planning the…

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