A 2019 study led by McMaster University revealed that hemophilia is about three times more prevalent than previously estimated, affecting more than 1.1 million men worldwide. Many cases remain undiagnosed, especially in regions with limited healthcare access. Continue reading
What Hemophilia Ontario Gave Me That I Didn’t Know I Needed – Omar’s Story
I am a hemophiliac. I say that plainly, because for a long time I couldn’t. For years, my bleeding disorder was something I wanted to neglect. I hated what it interrupted, managed it privately, and had little interest in explaining myself to a world that wouldn’t understand anyway.
In those early years, hemophilia was simply a series of inconveniences: failed infusion attempts, ankles instead of arms because the veins weren’t cooperating, no access to a community of advocates who understood what we were navigating. Nothing dramatic. Just quietly different.
Continue reading
Hemophilia Ontario 2026 AGM & Community Day
We are excited to invite you to our Annual General Meeting, taking place on Saturday, April 25th! Continue reading
PROBE Survey Reminder & Upcoming VWD Questionnaire
The Canadian Hemophilia Society (CHS) is reminding MyCBDR users to take part in the PROBE survey, a short, patient‑designed questionnaire that helps capture the real‑world experiences of people living with hemophilia. If you received an email invitation recently, it’s because you haven’t completed the survey since September 2025—or have never completed it. Continue reading
How Sports Frequency Affects Bleeding Risk in Youth with Hemophilia
A new study from Japan is shedding light on how often boys and young men with hemophilia can safely participate in sports, and why early adolescence may be a particularly important time to monitor bleeding risk. Continue reading
VWD Survey – University of Rochester
Researchers at the University of Rochester are interested in creating a patient-reported outcome measure that will assess the health, symptoms, and disease burden of individuals with von Willebrand disease. The study involves completing demographic questions and completing an online survey asking about the symptoms of von Willebrand disease you experience. Continue reading
Hemophilia Ontario Advocates for Access to Altuviiio in Ontario
Hemophilia Ontario has submitted a formal letter to provincial health decision‑makers in alignment with the recent efforts of the Canadian Hemophilia Society, asking the province to accept the Canadian Blood Services recommendation to add Altuviiio (efanesoctocog alfa) to the formulary for the treatment of hemophilia A. This new ultra‑long‑acting factor VIII therapy has the potential to significantly improve bleed protection, reduce treatment burden, and support better long‑term joint health for many in our community. Continue reading
SickKids Named the World’s Best Pediatric Hospital
SickKids has been named the world’s best children’s hospital, topping Newsweek’s global ranking of 250 pediatric centres. The recognition reflects the hospital’s extensive specialized programs, groundbreaking research, and its role as a national and international leader in child health. The full announcement highlights SickKids’ unique clinical capabilities, global partnerships, and its ongoing work to advance Precision Child Health.
Read the full article by Newsweek here
BioMarin Withdraws Roctavian Gene Therapy From the Market
BioMarin has announced that it is pulling Roctavian, its gene therapy for adults with severe hemophilia A, from the market. The company reported that demand for the therapy remained far below expectations, leading to significant financial losses and the decision to discontinue commercial availability. Continue reading
Volunteers Needed – Thunder Bay Bingo
Give 2 hours. Make a local impact.
Hemophilia Ontario is proud to be a licensed charity partner at Superior Shores Gaming Centre (435 Memorial Avenue, Thunder Bay) and we’re looking for volunteers to join our bingo team.
This is a simple, meaningful way to support families in the Thunder Bay area. Continue reading
