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NCATS Rare Diseases Are Not Rare! 2020 Challenge Winners and Honorable Mentions

Participants nationwide showcased their creativity for NCATS’ second Rare Diseases Are Not Rare! Challenge to raise awareness of all rare diseases and the importance of research. NCATS selected 3 winners and 5 honorable mentions from an extraordinary gallery of submissions. Browse the winning and honorable mention entries below and read more about the 2020 Challenge.

See details about the 2020 Challenge

First Place

A version of this video with audio description is available.

“Keep on Fighting” (video length: 2:03)

Jacob Thompson

“When I was 24 years old, about 2 years ago, I was diagnosed with the rare disease known as Friedreich’s Ataxia (FA). When my dreams of playing a sport in college ended, I needed something else to apply myself to. This began my journey as a hip-hop and spoken word artist. When I was diagnosed, it felt as though my dreams for the future had died. In many instances, I felt like giving up on my journey as an artist. Instead, I now have a new vision for my art: both to encourage those who are challenged, whether with rare disease or in general, and to raise awareness for rare disease.”

Learn more about Jacob Thompson’s experience with FA and what makes him hopeful for the future.

Second Place

A version of this video with audio description is available.

“How ‘Rare’ Are Rare Diseases?” (video length: 1:12)

Caroline Gainey

“I wanted to take the ‘Rare Diseases Are Not Rare’ Challenge and to face it head on. Not knowing much about rare diseases myself, I found that I was able to utilize information about rare diseases to create a video that would educate the general public about just how common ‘rare’ diseases actually are.”

Third Place

A version of this video with audio description is available.

“Rare is not Rare” (video length: :30)

Erica Barnes   
Andrea Douglas   
Jimmy Douglas

“Often, when someone from the general public hears the phrase ‘rare disease,’ they conceive of a tiny segment of the population and assume that rare diseases don’t rise to the level of a public priority. This entry seeks to address the problem of the general population thinking about rare diseases in isolation by introducing the basic but fundamental facts about rare diseases in a digestible and engaging way.”

Honorable Mentions

(in alphabetical order)

Rare Disease Photo Challenge

A Concept for a "Rare Disease Photo Challenge” image

Ramona Behshad   
Ali Javaheri
Soroosh Behshad

To help raise awareness about rare diseases, this proposed social media challenge would ask people who see the “Did You Know?” image on social media to participate by posting a photo of themselves along with one of the commonly used misnomers shown in the poster — such as a piece of French toast or a guinea pig — and tagging friends to spread the word!

Learn about team member Ramona Behshad, M.D., and how rare diseases research has impacted her life.

Funding Inequality

“Funding Inequality” (PDF - 1KB)

Michael Raymond
Laura Paice

This infographic raises awareness by depicting the difference in funding between research on rare diseases and research on cancer.

A version of this video with audio description is available.

“Life, Love, and Rare Disease” (video length: 1:59)

Amanda Montalbano   
DeeJo Miller   
Kelly Ranallo   
Mindy Bridges   
Bryce Heese
Tomi Pastinen   
Tom Curran   
Andy Pollard   
Laurie Ellison

The short video connects the viewer to the life behind a rare disease diagnosis, provides information about the prevalence of rare diseases and shows the impact research can have on the quality of life for patients and families.

A version of this video with audio description is available.

“NCATS Rare Diseases Are Not Rare!” (video length: 2:00)

Danielle Kinsey
Jonathan Bath

This poem is from the perspective of a person with a rare disease. It includes references to multiple diseases to help many people with rare diseases feel understood. The quilt featured in the video was donated to the person who inspired the project.

The Rare Majority Project

“The Rare Majority Project” (PDF - 1.1KB)

Rachael Baker   
Amy Wilstermann   
Karisa Vander Weele   
Emily Vink   
Grace Ong   
Samantha Ermer   
Olivia Cerny
Elle Hazlett   
Dale Hulst   
Christine Lee   
Savannah Taylor   
Adrian Van Stee   
Greta Wodny

The photos and quotes help raise awareness of rare diseases and the experiences of people affected by them. Team members involved in the Rare Majority Project collaborate with members of the rare diseases community by conducting interviews and sharing photos on social media with the hashtag #RareMajority.

Learn about team member Rachael Baker, Ph.D., and why she encourages people to get involved with rare diseases research.

If you need an accessible version of any of the non-video entries, please contact Enrique Lagos.

Last updated on April 22, 2024