Rare Diseases Are Not Rare! Challenge Offers New Tools to Raise Awareness

All too often, the nearly 7,000 rare diseases are misunderstood as being hidden, obscure disorders that affect only a small number of people. In reality, one in 10 people in the U.S. — that’s about 30 million individuals — has a rare disease. About 80 percent of these diseases are genetic in origin, more than half affect children, and many are life-threatening.

To address such misconceptions, in September 2018, NCATS launched a Challenge seeking creative ways to help raise awareness about rare diseases and the need for expanded research and patient support. The response was nearly 50 submissions, which included posters, videos, poems and more.

A screenshot from the video “In the Land of Rare Disease,” showing a child’s drawing of houses labeled with the names of rare diseases

Artwork from “In the Land of Rare Disease”

NCATS selected 11 honorable mentions and three winners:

  • First Place, $3,000: Nancy Netherland for “Unicorns and Super Heroes Are Rare — Rare Diseases Are Not.” Her entry incorporated designs for posters, social media posts, presentation materials and infographics depicting unicorns, superheroes and other mythical figures, combined with brief rare disease facts and humor to show how common rare diseases are.
  • Second Place, $1,500: Christina Loccke, Lindsey Bergstrom and Sarah Theos for “In the Land of Rare Disease,” a video narrated by a child. It includes original artwork from children with rare diseases, combined with brief facts about rare diseases.
  • Third Place, $500: Matthew Beardall, Sami Assaf and Naveen Upender for “Unicus,” a video compilation of “person-on-the-street” interviews with random community members in Bethesda, Maryland. “Unicus,” which is Latin for unique, provides rare disease education through informal conversations.

NCATS will display all the entries at Rare Disease Day at NIH on Feb. 28, 2019, at NIH in Bethesda, Maryland.

“The response from the rare disease community to our Challenge was overwhelming,” said Anne Pariser, M.D., director of the NCATS Office of Rare Diseases Research. “We’re trying to speak with one voice and bring attention to rare diseases generally and the need for more research and greater patient care. Patients and families, institutions, advocacy groups, rare diseases organizations, children’s hospitals, and others can use these efforts to help get the word out.”

Posted January 2019