In 1948, the foundation got its start as simply “The Hemophilia Foundation” – then in 1956, the foundation formally incorporated into what is known today as – the National Hemophilia Foundation. Even then, it was important to capture the organization’s expanding footprint across the U.S.
Now, in 2023, the time for change has come again.
Because of our longstanding name, the National Hemophilia Foundation is best known for helping people with hemophilia and also for serving the individuals and professionals who care for that community.
However, in the foundation’s many decades, we have also long served those facing other blood and bleeding disorders such as von Willebrand disease, rare factor deficiencies, platelet disorders, and more. Over the past 75 years, our powerful combination of research, education, and advocacy has improved the lives of people and families with a range of conditions – yet our name and image has not reflected that.
Now, as the National Bleeding Disorders Foundation (NBDF), we can be more inclusive of everyone we serve. Although hemophilia remains a major focus, our name ensures that all people with VWD and rare and ultra-rare deficiencies know that they can find a home within NBDF.
Although we’re adopting a new name and a new look, our work will not change in the short term. We remain dedicated to supporting our network of over 50 chapters across the country and channeling funds into blood and bleeding disorders research. And we will continue to educate and support families with these disorders as we work tirelessly to protect access to health care on the state and local level.
Over the long term, our new name will challenge us to explore how we can harness our resources and networks to help people facing other blood and bleeding disorders – because after all, bleeding disorders are blood disorders. In the same way that the National Hemophilia Foundation evolved to help people facing blood and bleeding disorders beside hemophilia, we can evolve once again to assist more families in need. Many rare blood and bleeding disorders don’t have a national support and advocacy network like ours — and together, we have a historic opportunity to change that.
As the National Bleeding Disorders Foundation, we will use our longtime legacy to inspire a future where even more people have access to the treatments and support they need to thrive. We will remain true to our core vision while raising awareness, expanding reach, and continuing to build upon 75 years of history, hope, and progress.
Rebranding Frequently Asked Questions (FAQS)
With the launch of our rebrand, you may have some questions. Here are answers to some of the most common questions. You can find these and other questions and answers at hemophilia.org.
Hemophilia remains a priority for us and we will continue to serve other bleeding disorders including VWD and rare and ultra-rare deficiencies.
To inform the rebranding, we completed phase 1 of the landscape analysis by listening to the populations we currently serve in focus groups, interviews and surveys.
We are conducting phase 2 of the landscape analysis to connect with other organizations to learn about other blood and bleeding disorders. We will use the data from the analysis to determine what programs, services, and education are already in place for other diseases and disorders, so we can collaborate and not duplicate efforts.
Our name has changed, but we are not changing our focus. Our lived experience experts, all family members, chapters, researchers, Hemophilia Treatment Centers, government partners, and industry partners will remain our sole focus.
During the rebrand reveal process, we listened to voices from our community who found the transition to "bleeding” in our name allowed them to see themselves reflected in the new brand. Based on this input and the goal of inclusivity with our rebranding, the decision was made to change to the National Bleeding Disorders Foundation.
Since bleeding disorders are blood disorders, it seemed that this choice was a natural fit, and much of our language will still revolve around “blood and bleeding disorders” — though we know at times certain projects that have already been established will only focus on bleeding disorders.
The National Chapters of NHF will be included in the rebrand. However the Affiliate Chapters are not expected to change their logo or brand identity, but will be encouraged to update the new NBDF logo on their websites or related collateral within a year of the rebrand. However, this is not a requirement.
National and affiliate chapters will play an important role in introducing the rebrand to the community over the next year. A working group has been formed to develop the strategies and materials needed for this initiative.
Keeping a URL with established authority will help ensure anyone who needs our resources will be able to easily find us.
There was much conversation and debate during phase 1 of the landscape analysis around the word “inheritable” and its usage/relevance in our work. Because key stakeholders surveyed were split about the use of the word “inheritable,” the ultimate decision was made to continue to use the term where relevant. However, we will continue using language which is supportive of those in our community with conditions that are acquired or result from a mutation.
NBDF uses "inheritable" rather than "inherited" because when a disorder is acquired or the result of a mutation, it becomes inheritable.