BioMarin recently announced the launch of RARE Scholars, an annual scholarship program for students with certain rare diseases, including Batten disease, who demonstrate strong academic performance, leadership skills, and participation in school and community activities.
The program is designed to assist high school seniors, graduates, current postsecondary undergraduates, or graduate-level students who have been diagnosed with any form of Batten disease, mucopolysaccharidoses (MPS) disease or phenylketonuria (PKU), regardless of treatment status.
There are two types of scholarships — $5,000 for undergraduate four-year or graduate study recipients, and $2,500 for two-year or vocational-technical study recipients. The program will award up to $20,000 each year. Scholarship winners will be announced in May, and awards will be distributed in June.
“This scholarship is important because patients with rare diseases make essential contributions to our world, and supporting the potential of these remarkable young people is a privilege,” Jean-Jacques Bienaimé, chairman and chief executive officer of BioMarin, said in a press release. “We are inspired by our patients, who are often children, and are proud to contribute to the education of people with rare diseases.”
RARE Scholars program applications for the 2018 fall semester must be submitted on or before March 30, 2018. Patients are not required to be previously or currently undergoing treatment with a BioMarin product.
Awards are granted without regard to race, color, creed, religion, sexual orientation, age, gender, disability, or national origin; however, applicants must be U.S. citizens, permanent residents, or ex-residents enrolled in school in the U.S. or U.S. territories. Additional details and eligibility requirements can be found here.
On Rare Disease Day, BioMarin also unveiled a commissioned, commemorative sculpture at its San Rafael campus, in recognition of the lives and struggles of those with rare diseases.
Designed by Gordon Huether of Gordon Huether Studios, the “trees of life” sculpture honors patients who have been affected by one of these three rare diseases, or those who have made a significant impact on the development and advancement of care and treatments for rare diseases.
At the inauguration ceremony, patients added heart-shaped padlocks engraved with the inscription, “Unlocking Tomorrows Together,” to the sculpture.
“I am honored by this opportunity to be a part of this permanent recognition of rare disease patients and those that advocate for their care. It is my hope that this sculpture will inspire the BioMarin community to continue to make a big difference for small patient populations,” Huether said. “The trees on the sculpture symbolize a deeply rooted connection to ongoing growth and strength, which couldn’t be more representative of those living with rare disease.”