Rare Diseases Are Not Rare: Gallery of Creative Work Raises Awareness of Rare Diseases

Jacob Thompson, who won first place in the NCATS Rare Diseases Are Not Rare! 2020 Challenge, describes living with a rare disease. (Jacob Thompson)

August 25, 2020

Approximately 30 million people in this country — or 1 in every 10 people — have some form of a rare disease. With nearly 7,000 known rare disorders — each affecting up to 200,000 people in the United States — rare diseases are hardly rare. To raise awareness of rare diseases in novel and creative ways, the NCATS Office of Rare Diseases Research (ORDR) launched its second Rare Diseases Are Not Rare! Challenge this year just after Rare Disease Day at NIH.

“We want to raise awareness of all rare diseases and bring to light their potential impact on public health,” said ORDR director Anne Pariser, M.D. “There is a misunderstanding that rare diseases don’t have as much of an impact on the American people as more common diseases, but they affect many more people and have a larger impact on the community than many people may realize.”

The 2020 Challenge entrants created a gallery of social media and art submissions, from videos and poems to spoken-word performances and personal stories. One additional focus this year was on fostering collaborations across the community. For some, that meant reaching out to rare diseases advocacy groups, doctors or researchers. Others partnered with people in schools and organizations who had an interest in the topic and wanted to get involved. This year’s Challenge participants had the added burden of a global pandemic, which, in some cases, added to their stories.

Of this year’s 26 entries, judges selected three winners to receive monetary awards and five honorable mentions. These entries are available on the NCATS website. The winners include:

• First place, $3,000: Jacob Thompson for “Keep on Fighting.” Thompson was diagnosed in college with Friedreich’s Ataxia, a rare disease. An aspiring athlete at the time of his diagnosis, he wanted to describe his experiences and raise awareness of rare diseases through a variety of media, including spoken-word poetry.
• Second place, $1,500: Caroline Gainey for “How ‘Rare’ Are Rare Diseases?” Gainey didn’t know much about rare diseases when she decided to participate in the Challenge. She collaborated with the Castleman Disease Collaborative Network, a rare disease advocacy group, because of its dedication to treating many rare diseases. Together, they developed a video that creatively uses facts and figures to describe how common rare diseases are.
• Third place, $500: Erica Barnes, Andrea Douglas and Jimmy Douglas for “Rare is not Rare.” The group worked with a rare disease advocacy group, along with a Minnesota high school student club interested in rare diseases, to create an animated GIF that provides facts about rare diseases.

“The people who participated wanted to spread the word about rare diseases in their own unique ways,” said ORDR project officer Alice Chen Grady, M.D., who organized the Challenge. “NCATS stresses community engagement and involvement with the work — and the science — we do. The challenge is to find effective ways of sharing that message.”