Applications are being accepted for Spring 2021
The EveryLife Foundation for Rare Diseases today announced the launch of the #RAREis Scholarship Fund, a program underwritten by Horizon Therapeutics plc to support life enrichment activities for adults living with rare diseases. The initial phase of the five-year, $1 million program will be comprised of 32 scholarship awards of $5,000, each to be used to help adults who aspire to pursue their personal goals through education and training.
Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens and hospitalizations, and exposure risks. While quality and duration of life continues to improve thanks to improved diagnosis and treatment approaches, individuals living with rare diseases still face disparities in achieving traditional life milestones.
“Every person who lives with a rare disease is more than just a patient. 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,” said Julia Jenkins, EveryLife Foundation for Rare Diseases Executive Director. “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. Now, thanks to the #RAREis scholarship fund, we can help patients not just to live with their disease but to thrive.”
The scholarship fund is open to individuals who are enrolling in at least one course (either in-person or online) at an accredited two- or four-year college, university or vocational-technical/trade school for the Spring 2021 semester. Applicants do not need to be pursuing a degree to be eligible. The scholarship is open to any adult (ages 17+) in the United States who is living with a rare disease, which is defined as less than 200,000 cases in the United States.
Scholarship awards will be determined based on completion of a short essay as well as the applicant’s leadership, participation in school and rare disease community activities, work experience, academic performance and financial needs.
“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 chief executive officer, Horizon. “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.”
Applicants may apply for the #RAREis Scholarship Fund by visiting RareScholarship.org beginning July 14th, 2020 The application deadline is August 28th, 2020, 3:00 p.m. Central Daylight Time. Awardees will be notified in October.
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About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources, and opportunities to make patient voices heard. By activating the patient advocate, the Foundation believes it can change public policy and save lives. The Foundation receives funding from philanthropic organizations, government, individual donors, and corporations to support its activities. Sponsors are offered recognition for their support, but do not influence Foundation policy priorities or event program content. View our complete funding policy.
About #RAREis
In February of 2017, Horizon launched the #RAREis program aimed at elevating the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community. The program is anchored by an Instagram page and website that showcases photos and stories of people touched by rare disease and captures elements of their patient, caregiver or advocate experience. To learn more, visit the #RAREis Facebook page and Instagram page and visit the website at www.RAREisCommunity.com.
About Horizon
Horizon is focused on researching, developing and commercializing medicines that address critical needs for people impacted by rare and rheumatic diseases. Our pipeline is purposeful: we apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, please visit www.horizontherapeutics.com and follow us on Twitter, LinkedIn, Instagram and Facebook.
