EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education.

The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 — to be used for college or training program costs next spring. Applicants do not need to be pursuing a degree to be eligible, but they have to be U.S. residents over the age of 17. The application deadline is Aug. 28 at 3 p.m. CDT. Awardees will be notified in October. Go here to apply.

Living with a rare disease means facing daily challenges, including frequent doctor’s visits and rigorous treatment regimens. While scientific advances continue for many of these diseases, individuals living with such disorders still encounter obstacles in achieving traditional life milestones.

“Every person who lives with a rare disease is more than just a patient,” Julia Jenkins, the foundation’s executive director, said in a press release. “We want our community to have an opportunity to pursue their dreams to be teachers, doctors, lawyers, executives, artists, or anything they aspire to be.”

“For the past 11 years we have been working to remove roadblocks for the development of lifesaving treatments and diagnostic opportunities for rare disease patients,” she added. “Now, thanks to the #Rareis scholarship fund, we can help patients not just to live with their disease, but to thrive.”

The fund is open to individuals who have been diagnosed with a rare disease. In the U.S., this means a disease that affects fewer than 200,000 residents at any given time. Applicants must plan to enroll full- or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational or technical trade school next spring.

In addition to a current transcript of grades and diagnosis verification form, applicants must submit an essay explaining their goals and how the scholarship would help achieve them.

Scholarships will be awarded based on the essays, demonstrated leadership, participation in school and community activities, work experience, academic performance, and financial need.

“The RAREis Scholarship Fund is designed to elevate the dialogue within the rare disease community and create opportunities to listen, share, and educate each other about the rare disease experience,” said Tim Walbert, chairman, president, and CEO of Horizon Therapeutics, which is sponsoring the program.

“We are inspired by the opportunity presented by the RAREis Scholarship Fund to accelerate the aspirations of adults with rare diseases, and to showcase that the experience of rare disease does not have to limit one’s dreams,” he added.

The #RAREis program, which was started by Horizon as a social media campaign to elevate the rare disease community, aims to raise awareness of those living rare disorders.

For questions about the scholarship program, email Lindsey Cundiff, the foundation’s associate director of patient engagement, at [email protected].