Established in 2010, the contest is open internationally to patients, caregivers, physicians, friends, or anyone else who is connected with the rare disease community.
In the United States, a disease is defined as rare when it affects fewer than 200,000 residents nationwide at any given time. Aromatic l-amino acid decarboxylase (AADC) deficiency is considered a rare disease, as only about 100 people with the condition have been described in the medical literature worldwide.
Winners of this year’s Rare Artist contest will be notified by Dec. 11. A public announcement will be made next Jan. 15.
The categories and prizes are: children ages 4-11, $100; teens 12-18, $250; and adults ages 19 and older, $500. All mediums, including painting, photography, and digital art, are accepted. If submitting for someone else, enter the artwork in the category that represents the artist.
In addition to the cash prizes, awardees also will be given the opportunity to showcase their original artwork during Rare Disease Week on Capitol Hill, scheduled for March 1-4 next year. The winning artwork also will be posted on the Rare Artist online gallery, and featured at various patient and industry events.
International submissions are welcome. However, to receive a travel stipend for Rare Disease Week, a U.S. residency address is required.
Those interested in having their artwork voted on through Facebook, in the public voting, should submit here. The deadline is Oct. 1 at 5 p.m. EST. If submitting on behalf of someone who does not have a Facebook account, enter using the artist’s name. No disease affiliation is necessary for voting.
For those who either do not have a Facebook account or do not wish to participate in the public vote, submissions may be sent to [email protected] Those submissions will be accepted through Oct. 30 by 5 p.m. EST, when the public voting also closes.
Participants are allowed two submissions each. Previous winners may enter again, but are not allowed to receive a finalist award for two consecutive years.
“The primary goal of the Rare Artist program is to spread awareness about rare diseases and amplify the stories behind the artwork,” the foundation states on its webpage.
“Participating in the Rare Artist contest is another way to get your voice heard. Sharing your artwork in front of Congress and other attendees during Rare Disease Week is advocacy. Participating in the voting process on Facebook and cheering on your fellow advocate through social media is advocacy,” according to the website.
“We want to foster artists into advocates, and this program can help get you there,” the foundation concludes.
“This piece was done when I was 11 years old,” Barry, then 18, stated in her accompanying narrative. “For the first time in my life the pain of sickle cell had become intractable. I didn’t have words to articulate my pain, so I painted my hopelessness onto paper.”
The EveryLife Foundation uses science-driven public policy to advance the development of treatment and diagnostic opportunities for rare disease patients.
More than 900 rare disease advocates traveled to Washington, D.C., in early 2020 to meet with members of the U.S. Congress. These advocates, representing 227 patient organizations, participated in 393 meetings with the congress members with their message: “Every voice matters!”
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