new scholarship aims to level the playing field for students living with rare diseases
canada’s first pan-rare scholarship offers funding, mentorship and community to students facing hidden barriers
published may 28, 2026
last updated jun 01, 2026
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5 minute read
living with a rare disease should not mean having fewer opportunities. all images adobe stock
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when we think about rare diseases, we assume they exist on the margins, affecting only a handful of people. yet, when considered together, rare diseases are not actually rare at all.
there are more than 10,000 known rare diseases, and an estimated three million canadians live with one — nearly 70 per cent of whom are children. collectively, these conditions are far from uncommon, and people living with them often face challenges that go largely unseen.
beyond the medical complexities, people living with rare diseases face a cascade of inequities that can disrupt nearly every aspect of life — including education. for many young people, pursuing post-secondary studies means navigating not only coursework, but also the added stress of specialist appointments, travel for care, and financial strain on their families.
“having to manage your disease on top of being a student is like having a full-time job,” says andrea, a post-secondary graduate and rare disease patient advocate.
andrea describes the transition to university as particularly challenging. as most undergrads are adjusting to new routines, students living with rare diseases are coping with the transition from pediatric to adult care systems — often losing coordinated support of pediatric care and facing long wait times to rebuild their medical teams.
“there are many other hidden challenges,” andrea points out. “having less energy overall, even walking across campus to get to class was difficult and painful for me. there were many times i was either late to class or couldn’t make it at all.”
the financial burden is equally significant. according to the canadian organization for rare disorders (cord), rare disease patients incur substantially higher health-care costs across the continuum of care. specialist visits cost, on average, seven times more annually than for the general population, while emergency department visits are four times higher and hospitalizations twice as costly. many patients also face years of misdiagnoses and prolonged diagnostic journeys that drive up out-of-pocket expenses.
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those pressures can make post-secondary education feel out of reach.
for many young people living with a rare disease, pursuing post-secondary studies means navigating not only coursework, but also the added stress of specialist appointments, travel for care, and financial strain.
“even highly motivated students can find it hard to stay on track,” says dr. svenja espenhahn, manager of the canadian rare disease network (crdn). “the barrier is not a lack of ambition, but a lack of equitable support. many young people are navigating complex health realities alongside their education, and too often the system isn’t designed to support them in doing both.”
that gap is what inspired the launch of the rarevolution scholarship program, canada’s first national, pan-rare scholarship designed specifically for students living with a diagnosed or suspected rare disease.
announced on april 29, 2026, by the crdn at the cord conference, the program will award at least 15 scholarships, each worth up to $5,000, to undergraduate and graduate students across the country. the program will consider applications from students between 17 and 29 years old living with a rare disease, with either a confirmed diagnosis or a condition suspected by a health-care professional.
organizers emphasize the initiative goes far beyond financial aid.
in addition to tuition support, the program aims to address the isolation many students experience by providing recipients with access to mentorship, peer networks and opportunities to share their stories. in doing so, it ensures their voices are heard, meaningfully included and valued not only for their resilience, but for the perspective they offer.
the rarevolution scholarship program will award at least 15 scholarships, each worth up to $5,000, to eligible undergraduate and graduate students across the country.
andrea says a program like this would have made a profound difference during her own studies. despite having some financial support for tuition, she faced expenses that quickly added up to thousands of dollars a year for physiotherapy, medications and travel for care.
“financial support from a scholarship like rarevolution would have allowed me to be less stressed about the cost of appointments and focus more on my health and education,” says andrea. “just having support from others who understood what i was going through would have been immensely helpful to me, in terms of navigating the search for accommodations, sharing tips about how to manage our education and our conditions and discovering additional opportunities and resources.”
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the scholarship also aims to support academic success in more practical ways, from covering tutoring costs to helping students manage time lost to medical appointments. the scholarship program is made possible thanks to financial support from alexion canada, a rare disease company.
for dr. espenhahn, the program reflects a broader shift in how rare diseases are understood — not as isolated conditions, but as a shared experience with common challenges.
“rare diseases are individually rare but collectively common,” she says. “by designing this as a national program inclusive of all rare diseases, we’re ensuring that students aren’t excluded simply because their condition is less well known or not yet diagnosed.”
at its core, dr. espenhahn adds, the scholarship is an investment in long-term well-being and opportunity.
education is closely tied to employment, financial stability and independence. these outcomes can be harder to achieve for those navigating chronic illness without adequate support. by reducing barriers, the rarevolution scholarship aims to change that trajectory.
“at the broader level, this is about long-term impact,” says dr. espenhahn. over time, she says the crdn hopes the program will help cultivate a network of leaders, including individuals whose lived experience with rare disease becomes a source of insight, resilience and advocacy.
for andrea, that vision is just as important as the financial support.
living with a rare disease, she says, should not mean having fewer opportunities.
while the rarevolution scholarship is a meaningful step toward addressing one of many equity issues experienced by people living with rare conditions, there is still more to be done. for that vision to become a reality for all three million canadians living with a rare disease, continued collaboration across the rare disease community, stakeholders, government and decision makers will be essential to expand support and build the systemic support needed to ensure that a rare diagnosis never stands in the way of a young person’s future.
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interested in applying? visit canadianrdn.ca/scholarship before the friday, june 12 deadline.
this story was created by healthing content works, healthing.ca’s commercial content division, on behalf of alexion canada, astrazeneca’s rare disease group and proud founding funder of the rarevolution scholarship program.
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