Thanks to the support of Horizon Therapeutics and their additional funding of 52 scholarships for 2023, The EveryLife Foundation for Rare Diseases provided a total of $435,000 to 87 rare disease patients through the #RAREis Scholarship Fund. This year marks an incredible milestone in the #RAREis Scholarship Fund, as a total of $1,320,000 has be awarded to rare disease patients since the scholarship fund was started in 2020.
The 2023 #RAREis Scholarship Fund received a record number of applicants. One-time awards of $5,000 scholarships were provided to 87 rare disease recipients representing 36 states and 73 diseases.
“This is the fourth year of the #RAREis Scholarship Fund. Majority of the scholarship recipients are first-time awardees and new advocates to the EveryLife Foundation for Rare Diseases”, Stephanie Riordan, Associate Director of Patient Programs, says. “We are proud to take time to get to know each and every awardee and empower them to continue sharing their story and advocating in the rare disease space. For those who have received the scholarship more than one year, we are thrilled to see their involvement with advocacy grow – many attended Rare Disease Week on Capitol Hill in 2023 in person. Some recipients also credit their success in careers to the scholarship and opportunities EveryLife provides beyond the financial award.”
Mariel Rancel is a first-time #RAREis Scholarship awardee diagnosed with Hermansky-Pudlak Syndrome. Mariel had is a teacher at Eric Solorio Academy High School in Chicago’s Gage Park neighborhood. “I started to offer an Anatomy and Physiology elective for 12th grade students. Many students with and without IEPs or who are recent immigrants learning English are interested in healthcare careers but might not yet ready for the academic rigor of an AP science class” Mariel says, reflecting on her own experience with an IEP growing up. “Those students now enjoy learning about rare diseases like fibroplasia ossificans progressive, HPS, acromegaly, and more as part of my curriculum. It is an honor to build empathy and awareness for rare disease among future healthcare professionals. The #RAREIs Scholarship is allowing me to maintain my teaching career while pursuing my interest in nutrition policy and food sovereignty.” Mariel will use her Master’s degree, funded by the #RAREis Scholarship, to teach new nutrition courses at her high school, allowing students to receive college credit.
To learn more about the #RAREis Scholarship Fund, visit rarescholarship.org.
