This year, the #RAREis Scholarship Fund, in partnership with the EveryLife Foundation for Rare Diseases, will be awarding $5,000 scholarships to 88 adults (17+) living with a rare disease. Applications are open until April 22 at rarescholarship.org.
The program was established in 2020 to enrich the lives of adults living with rare diseases by providing financial support for their educational pursuits. This year, the #RAREis Scholarship Fund will provide $5,000 grants to 88 U.S. adults (17+) living with a rare disease to pursue a variety of educational activities. Applications close on Monday, April 22 at 2pm (CT).
For more detailed information, visit: https://everylifefoundation.org/rare-scholarship.
Who is eligible?
- *The scholarship is available for adults (ages 17+) who are legal residents of the U.S. living with any rare disease, regardless of treatment regimen.
- *The scholarship can be used at an accredited two- or four-year college, university or vocational-technical/trade school for the Fall 2024 semester. Students must be enrolled in at least one course (in-person or online).
- *Students do not need to be pursuing an undergraduate or graduate degree, the scholarship is applicable for individual courses at accredited institutions.
- *The award is for one semester, starting in Fall 2024. While it is not renewable, students may reapply to the program each year they remain eligible.
How can I apply?
Visit RAREisScholarship.org to apply today.
- What can you expect?
o Scholarship awardees must be diagnosed with any form of rare disease. A Diagnosis Verification Form provided by a physician must be submitted with the application. If timing is an issue, applicants can submit with a placeholder file and email the official form to rareis@scholarshipamerica.org.
o Undiagnosed individuals can be eligible so long as a physician confirms they have a suspected rare disease via the Diagnosis Verification Form – available for download at: RAREisScholarship.org.
o A disease is considered “rare” if there are fewer than 200,000 cases in the U.S. You can check to confirm your disease is rare here: The National Institute of Health and the Genetic and Rare Diseases Information Center and the National Organization for Rare Disorders.
- Applications will be asked to submit an essay (2,000 characters / 400-word maximum) addressing the following: Reflect on a time in your rare disease journey where you intentionally practiced resilience.
- Scholarships will be awarded based on the following criteria:
*Consideration of essay response
*Participation in community activities
*Work experience
*Academic performance
*Financial need considered
- Applications will be reviewed by an EveryLife-appointed Board of Reviewers, independent of Amgen. Scholarship awards are made without regard to race, creed, color, sex, religion, disability or national origin.
- Applicants may apply for the #RAREisScholarship Fund by visiting RareScholarship.org beginning March 18, 2023.
- The application deadline is April 22 at 2 p.m. ET.
- Applicants will be encouraged to share their rare disease story with EveryLife Foundation and Amgen, but this is not required.
- Awardees will be contacted privately to coordinate award acceptance and can opt-out of being publicly announced, should they choose to do so. Awardees will be notified in Summer 2024.
For general inquiries regarding the #RAREis Scholarship, please contact Stephanie Riordan, Associate Director of Patient Programs, at sriordan@everylifefoundation.org. For questions and concerns regarding applications with Scholarship America, please contact the Scholarship America #RAREis Scholarship fund line at 507-931-0799 or email rareis@scholarshipamerica.org
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.