Help children suffering
from ultra-rare, fatal diseases.
You can make a difference for children suffering from ultra rare diseases. By supporting Rare Trait Hope Society, you will fund research projects and help develop treatments and cures for children, helping them to live their best lives.
We stand with Charleigh. We stand with her family. And we stand with every family that’s been forced to fight alone.
July 17, 2025
Vancouver, BC: As reported by Vaughn Palmer in the Vancouver Sun, Charleigh is the only child in Canada to be denied public funding for the only treatment that offers hope against this fatal disorder. Her family has had to turn to GoFundMe to keep her alive — in a province and a country that claims to fund life-saving medication for rare disease patients.
🟣 Contact your MLA today and urge them to stand up for Charleigh — and for the future of rare disease care in B.C. and across Canada.
🔗 Find your MLA here
📣 Demand answers: Where is the funding for rare diseases, Premier Eby? Ottawa sent it — why hasn’t it reached the children who need it most?
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