NORD Rare Disease Video Library APS Type 1 Video

By June 29, 2019 July 8th, 2019 Uncategorized

The NORD Rare Disease Video Library Offers New Educational Resources

Posted by Christina Jensen

New video library launched with funding from Incyte

Washington, DC, June 19, 2019–The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the NORD Rare Disease Video Library, a resource featuring videos on rare diseases and related topics for patients, caregivers, students, professionals and the public.

The NORD Rare Disease Video Library features videos on the following disease states, with more to follow.

  • Autoimmune Polyglandular Syndrome (APS) Type 1
  • Essential Thrombocythemia (ET)
  • Opsoclonus-Myoclonus Syndrome (OMS)
  • Polycythemia Vera (PV)
  • Primary Myelofibrosis (PM)
  • Phenylketonuria (PKU)
  • Short Bowel Syndrome (SBS)

Also included in the Library are videos on related rare disease topics, including gene therapy and tips for those recently diagnosed, as well as patient stories. The plan is for the Library to grow over time with additional content added on an ongoing basis.

“Since 1983, NORD has been a leader in presenting rare disease information in accessible language. The Rare Disease Database has long been one of the most visited features of our website,” said Sika Dunyoh, Director of Education Programs for NORD. “People learn differently, and video has become widely recognized as a powerful teaching tool for individuals at all levels of medical knowledge. It has special significance with rare diseases because video allows those who might not otherwise have availability to information in an understandable format to access content of particular interest to them.”

The NORD Rare Disease Video Library resides on the NORD website, www.rarediseases.org, which receives traffic from over 1.3 million visitors per month.

The Library was made possible through an educational grant from Incyte. NORD is grateful to Incyte for their support.

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About the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90 percent are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.

NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with over 280 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.

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