EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

The annual EURORDIS Photo Award contest is inviting people worldwide to visually express what life is like with a rare disease, while raising awareness through their work of these disorders.

Submissions for next year’s awards are open until Jan. 31.

The competition is organized by France-based EURODIS, an alliance of rare disease patient organizations, and is open to anyone with an interest in rare diseases. Participants who are under 18 must have parental permission. Each photo must represent or be related to one of the roughly 7,000 rare diseases globally.

During the submissions period, photos will posted to the event gallery for public viewing. From these submissions, Marcus Bleasdale, a prominent National Geographic photographer, will ultimately select five finalists. The public will be asked to vote on these photos online starting on Feb. 11.

Winners will be announced the night of the EURORDIS Black Pearl Awards, a live-streamed Feb. 24 event that highlights the successes of the rare disease community and raises funds for EURORDIS programs for patients and their families.

The finalist with the most votes will receive the EURORDIS Photo Award and a Go Pro Hero 9 Black or other action camera. The second-place winner will receive a Potensic D80 Drone kit or equivalent, and the person who receives the third-highest number of votes gets a Mini Projector Apeman or other type of video projector. All five finalists will receive a certificate.

“Last year, hundreds of people from more than 30 different countries around the world submitted a photo, each reflecting the drive of people living with a rare disease worldwide,” EURORDIS stated on a webpage. “In these challenging times, do you have a photograph that captures life with a rare disease during the COVID-19 pandemic? Perhaps you have the perfect picture already, or perhaps you haven’t taken it yet.”

Last year’s top winner was Cheryl Holbert Millard of Egypt. The photo, titled “Zein and his mom,” is of a mother tenderly kissing the cheek of her smiling 2-year-old son, who is in her arms. The two were at a playground after Zein received treatment for Hutchinson-Gilford Progeria syndrome, a genetic disorder that causes children to age rapidly, usually starting in the first two years of life.

The second-place photo, in black and white, is by Meghan Garriott of the U.S. and depicts a bare-chested and unsmiling young Emmett, who, while seated, is receiving his twice monthly immunoglobulin infusion for severe combined immunodeficiency (SCID), an inherited disorder of the immune system that affects mostly boys. The photo is titled “Infusion Day.”

The third-place photo, “Pure Joy,” was taken by Kelly Watkins of the U.S. and represents homocystinuria, a disease that interferes with the body’s ability to process the essential protein methionine. The photograph captures a spontaneous moment between a woman and her daughter Gabbi, who are sitting next to each other in a doorway, smiling brightly. Soon afterward, Gabbi would undergo her second major spinal fusion surgery as a result of the disease.

Go here to see other entries from last year’s competition. Questions about the contest can be sent to [email protected].