Introducing our upcoming new name …

This year marks an important milestone for our community as we will be introducing a new national organizational name that reflects who we are today and who we are becoming.

As our community grows and evolves, so too must our organization that represents it.

Our mission remains unchanged: to advocate for and improve the health and quality of life of all people in Canada living with inherited bleeding disorders until cures are universally available. Our vision continues to guide us toward a world free from the pain and suffering of inherited bleeding disorders.

We are proud to introduce our upcoming new name:

BLEEDING DISORDERS CANADA

With the national name now formally approved, our provincial chapters were engaged throughout the national consultation process. They will now undertake their own reviews to determine whether and how to align with the new name. Each chapter will make its own decision regarding the adoption of a new provincial chapter name.

Stronger together under one name
This is more than a name change. It is an evolution. We are one community with many experiences, now represented under one inclusive name. This new identity strengthens who we are together while honouring the legacy that built us.

For decades, people living with hemophilia and their families have shaped this organization through advocacy, resilience, and leadership. That history remains at the heart of who we are. We honour it with gratitude and respect. At the same time, our community has grown.

We support people living with hemophilia A and B, von Willebrand disease, rare factor deficiencies, platelet function disorders, women and girls with bleeding disorders, those who remain undiagnosed, and those who have yet to find their place within the system. Our new name reflects the full breadth of the community we serve, today and into the future.

Our commitment to the community
We are committed to meeting the needs of all people with inherited bleeding disorders, especially those who are underserved or undiagnosed.

We remain steadfast in safeguarding the recommendations of the Krever Commission and protecting the safety of Canada’s blood system. As time passes, awareness of the Tainted Blood Tragedy may diminish, and we must continue to protect and strengthen our national hemovigilance surveillance systems.

We will continue to advocate for optimal medical and psychosocial care for everyone living with a bleeding disorder.

We raise awareness and deliver trusted information to patients, families, health care professionals, and the broader public.

We promote and fund research to improve treatments and ultimately to find cures.

We continue to advocate for access to the safest and most effective therapies across Canada.

Why this evolution matters
Hemophilia treatment has advanced significantly in recent years. While this progress is extraordinary, it also changes the landscape of care. As treatment burdens shift, there is a risk that specialized services could be reduced unless the full scope of community need is clearly demonstrated.

Today, approximately 5,000 people with von Willebrand disease are diagnosed and registered in Canada’s national bleeding disorders registry yet estimates suggest that number should exceed 20,000. Women and girls remain underdiagnosed. Rare bleeding disorders remain underrecognized. If we do not actively identify, engage, and support these individuals, we risk reduced investment in comprehensive care within provincial health systems.

Bleeding Disorders Canada signals clearly that our community is larger than previously recognized, that our needs are diverse, and that our advocacy must reflect that reality.

A community-driven decision
This decision was made by the Board of Directors following extensive consultation with community members across the country. This evolution comes directly from our community and is designed to ensure everyone sees themselves reflected in our national organization.

Our foundation remains strong. Our advocacy remains relentless. Our commitment remains unwavering. Only our name has changed to better reflect who we truly are.

Together, as Bleeding Disorders Canada, we move forward united, inclusive, and focused on the future.

 

More details about the official launch of Bleeding Disorders Canada will be shared with the community in the coming months.