EveryLife Foundation's Commitment to Education
Students with Rare Diseases Receive Essential Support
In a recent announcement, the EveryLife Foundation for Rare Diseases has revealed the recipients of the 2025 #RAREis Scholarship Fund. This program, which was established in collaboration with Amgen, aims to empower students facing the unique challenges that come with living with rare diseases. Throughout its six-year journey, the program has awarded an impressive total of over $2.45 million through 491 scholarships, including 104 scholarships allocated just this year.
Recognizing the Challenges
For many individuals living with rare diseases, the road to higher education may be fraught with obstacles, primarily financial challenges. Michael Pearlmutter, CEO of the EveryLife Foundation, emphasizes the critical need for support when he states, "Living with a rare disease presents extensive challenges, including financial burdens that may make continuing education difficult for students." The #RAREis Scholarship Fund is tailored to bridge this gap, ensuring that students receive the necessary financial assistance to succeed both academically and personally.
Diverse Talent Pool
In 2025, the program saw a remarkable increase in interest, with more than 2,000 applicants—a nearly 20% rise from the previous year. The scholarship recipients are a reflection of the rich diversity within the rare disease community, representing individuals from 35 states. These enthusiasts are attending over 90 colleges and universities across the nation, showcasing their determination and ambition.
Beyond Financial Aid
The #RAREis Scholarship Fund goes beyond providing financial assistance. As highlighted by Stephanie Riordan, Senior Director of Patient Programs, the program has expanded to offer valuable mentorship opportunities, group discussions focused on specific areas of study, and tailored resources for navigating the unique challenges faced by rare disease patients. These initiatives include guidance on transitioning to adult care and advocating for greater accessibility on college campuses.
Real Impact on Lives
The impact of the scholarship is significant and resonates deeply with the awardees. Isabella Duarte-Crespo, a 2025 scholarship recipient living with Spina Bifida, shares her perspective: "Living with a rare disease has shaped how I think about problem-solving and community support. The scholarship has not only lifted financial burdens but has also encouraged me to keep advocating for inclusive spaces." This sentiment captures the essence of what the EveryLife Foundation strives to achieve through their initiatives.
Stay Connected
Interested students and supporters alike can stay in touch with the EveryLife Foundation through their monthly newsletter, Rare Report, and various social media platforms. Information regarding the upcoming 2026 scholarship cycle will be announced soon. The foundation encourages individuals looking for financial assistance or those wishing to contribute to the scholarship fund to engage with the #RAREis Scholarship Fund and explore community scholarship options available through the EveryLife Foundation.
About the EveryLife Foundation
The EveryLife Foundation for Rare Diseases is a nonprofit organization committed to improving health outcomes for individuals living with rare diseases. Through policy advocacy, research initiatives, and community engagement, the foundation drives change to meet the needs and rights of the rare disease community.
To learn more about the foundation's work and impact, visit EveryLifeFoundation.org and connect on social media platforms like Facebook, X, Instagram, and LinkedIn.
Frequently Asked Questions
What is the #RAREis Scholarship Fund?
The #RAREis Scholarship Fund is a program that supports students living with rare diseases by providing financial assistance and resources for higher education.
How much financial assistance does each scholarship provide?
Each scholarship provides $5,000 to aid recipients in their pursuit of undergraduate, graduate, or non-traditional accredited education.
How can students apply for the scholarship?
Students can apply for the scholarship through the EveryLife Foundation's website during the application cycle, which is typically announced annually.
What additional resources does the scholarship program offer?
Beyond financial aid, the program offers mentorship opportunities and resources to navigate challenges unique to rare disease patients.
How can individuals support the EveryLife Foundation?
Individuals can support the EveryLife Foundation by donating, spreading awareness, or contributing to the scholarship programs through various engagement opportunities.
