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April 2020

Rare Family Day

April 18
Novato, CA

Rare Family Day is held to honor patients with rare diseases. Please join us at Ultragenyx for a "Star Wars" themed day of live music, food, games, refreshments and to…

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Wilson Disease Association Conference: Trends and Innovations

April 25
Denver, CO

The 2020 WDA patient and family conference will be held in Downtown Denver.

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May 2020

2020 Patient Advocacy Certificate Training (PACT)

May 11 - May 14
Sioux Falls, SD

A partnership between Sanford Research and Professional Patient Advocates in Life Sciences (PPALS) this event is a one-of-a-kind opportunity to learn the dos and don’ts of the professional patient advocacy…

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Living Rare, Living Stronger NORD Patient & Family Forum

May 14 - May 16
Cleveland, OH

NORD is headed to Cleveland, Ohio for our 2020 Living Rare, Living Stronger Patient and Family Forum. What’s even more exciting–the Rare Impact Awards, included in this event, will be…

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June 2020

Global Genes RARE Drug Development Symposium

June 11 - June 12
Philadelphia, PA

Global Genes, in partnership with the Orphan Disease Center at the University of Pennsylvania School of Medicine, hosts the annual RARE Drug Development Symposium designed to connect, educate and inspire…

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DIA 2020 Global Annual Meeting

June 14 - June 18
Washington, D.C.

Fueled by the ideas of more than 7000 attendees, the DIA 2020 Global Annual Meeting will bring together patients, industry, regulators, and academia from all angles of the product lifecycle,…

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CISCRP Medical Heroes Appreciation 5K Run & Walk

June 15
Washington, D.C.

Join us for our Medical Heroes Appreciation 5K Run & Walk in Washington, D.C. to celebrate the study volunteers who give the gift of participation in clinical research. Prizes for…

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Worldwide CDKL5 Awareness Day

June 17

Each June, we work to educate and raise awareness about CDKL5 Deficiency Disorder. June has special meaning to the CDKL5 community, and June 17th is Worldwide CDKL5 Awareness Day.

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FSHD Connect Conference

June 27 - June 28
Washington, D.C.

The annual FSHD conference is a gathering of patients, families, researchers, and healthcare providers.

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July 2020

International Metabolic Conference

July 24 - July 26
Pittsburgh, PA

MitoAction and the Organic Acidemia Association (OAA) will be co-hosting the 2020 International Metabolic Conference free of charge for parents, affected individuals, family members, and friends. Professionals are also invited…

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