Make-A-Wish Canada Launches New Fund for Children with Rare Conditions

Friday, February 28, 2025, Toronto, Ontario – On this Rare Disease Day, February 28, Make-A-Wish^® Canada announces the launch of a new Rare and Genetic Disease Fund. This fund is designed to ensure that more children with rare diseases – who often lack treatment options – can experience the hope, healing and improved health outcomes that a wish can bring.

The fund is made possible through a grant from the Alexion Charitable Foundation, whose mission is to bring promise, hope and belonging to people living with a rare disease and those who care for them. The Alexion Charitable Foundation’s contribution will help strengthen Make-A-Wish Canada’s commitment to grant the wish of every eligible child facing a critical illness – no matter how rare.

“Most children with rare and genetic diseases face the heartbreaking reality of limited or no treatment options. What we can offer – and what can make a profound difference – is the health benefits that come from a wish experience,” said Meaghan Stovel McKnight, Chief Executive Officer of Make-A-Wish Canada. “Our new Rare and Genetic Disease Fund, with support from the Alexion Charitable Foundation, will allow us to reach more kids with rare diseases and their families with the hope, healing and much-needed relief from a wish being granted.”

Rare diseases are more common than many realize, with one in 25 children born with a rare inherited disease. There are over 7,000 conditions, including respiratory disorders, spinal muscular atrophy, and mitochondrial disease. Only five percent of children with a rare and genetic disease have access to treatment options and one-third of children do not live to see their fifth birthday, as reported by the Canadian Institute of Health Research.

According to a recent survey conducted by Make-A-Wish Canada, nearly all referring medical providers report that a wish experience significantly improves a sick child’s quality of life and enhances physical well-being, providing strength to cope with their condition.

In 2024, Make-A-Wish Canada granted nearly 300 wishes to children with rare conditions, a 70 percent increase from the previous year. It’s something the charity hopes to be able to continue to grow with this new fund and potential new partnerships with the rare disease community.