EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

Patricia Inacio, PhD avatar

by Patricia Inacio, PhD |

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The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education.

For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each worth $5,000, to cover a winning applicant’s undergraduate, graduate, or trade schooling costs. In the U.S., a rare disease is defined as one affecting fewer than 200,000 residents.

Applicants do not need to be pursuing a degree to be eligible, but must be planning to take at least one course (either in-person or online) at an accredited college, university, or technical school for the fall semester. The scholarship fund is open to all U.S. residents with a rare disease diagnosis, ages 17 or older.

The application deadline is May 7, at 3 p.m. CT. Awardees will be notified in June. Go here to apply.

“We were grateful to be able to launch this critical new program and provide $185,000 to rare disease students as our community was facing financial hardship due to COVID,” Julia Jenkins, the executive director of EveryLife Foundation, said in a press release.

Among the unique challenges of living with a rare disease is frequent doctor visits and rigorous treatment regimens that can affect patients’ ability to realize life milestones.

“We know the need continues to be great for this type of financial support, and we hope to see more non-traditional students apply, as this scholarship is available to all rare disease patients,” Jenkins added.

An essay of about 350 to 400 words must accompany each application, addressing how this scholarship will help the student in becoming a leader in the rare disease community. Leadership skills, work experience (including military service), participation in school and community activities, previous academic performance, and financial need will also be considered.

Participants must also submit their most recent transcript of academic grades, and a diagnosis verification form completed by their doctor.

While the award is not automatically renewed for another year, winners may reapply each year they meet the fund’s eligibility requirements.

Scholarship money will be given directly to a winning applicant’s school in early August.

Horizon underwrote the #RAREis Scholarship Fund with a $1 million donation that supports it for five years.

“We are thankful to Horizon Therapeutics for making this scholarship possible and we hope that other community leaders will join them so that we can provide more scholarships in 2021,” Jenkins said.