Rare Disease Report

NIH and NCATS to Host Rare Disease Day Event on March 1

FEBRUARY 26, 2018
Kaitlynn Ely
The National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) Clinical Center will observe World Rare Disease Day this year by hosting an event to celebrate patient advocacy.

NIH has recognized Rare Disease Day since 2010 with the slogan “Patients & Researchers – Partners for Life”. NCATS’ philosophy of researchers working alongside patients, families, caregivers and advocacy groups aligns with the purpose of World Rare Disease Day.

The Rare Diseases Clinical Research Network, the Therapeutics for Rare and Neglected Diseases program, and the Genetic and Rare Diseases Information Center are NCATS organizations that serve rare disease patients in providing treatments and promoting collaborative research projects.

The event will be held on Thursday, March 1 from 8:30 a.m. to 4:00 p.m. in the Masur Auditorium, Building 10 at the National Institutes of Health in Bethesda, Maryland. Presentations, posters, exhibits, an art show and tours will be open for event participants.

Four panel sessions during the day cover topics that include gene editing, collaborating for successful research and encouraging the next generation of the rare diseases community.

Robert M. Long, Director of Strategic Development for the advocacy group Uplifting Athletes, will be making an appearance and discuss how student athletes can impact rare disease awareness. Other advocacy groups scheduled to be in attendance include: the Calliope Joy Foundation, the Curing Retinal Blindness Foundation, and the Children’s Tumor Foundation.

Other special appearances include Senator Amy Klobucher (D-MN), Senate Co-Chair, and Representative Leonard Lance (R-NJ), House Co-Chair, for the Rare Disease Congressional Caucus. Additionally, Philip John (P.J.) Brooks, Ph.D., Program Director, Division of Clinical Innovation (DCI) and Office of Rare Diseases Research (ORDR), NCATS, NIH, will provide an overview of the NIH Common Fund Somatic Cell Genome Editing Program.

NIH hopes to demonstrate the commitment the institute possesses in promoting rare disease research; highlight NIH-supported rare disease research and the development of diagnostics and treatment; initiate a mutually beneficial dialogue among public and private researchers, patients, advocates, and policymakers; exchange the latest rare disease information with stakeholders; and share the stories of patients, their families, and their communities.

Registration for the event can be found here.

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