People with blood or bleeding disorders and their family members are the heart of our work. We support research that has a measurable impact on people’s lives; deliver education that helps people with bleeding disorders and their family members thrive; and advocate for policies at the state and local level that protects access to healthcare.
Our mission is to serve those affected by all inheritable bleeding disorders. We are committed to our employees as well as those we serve. To do so, we seek and value those qualities, both visible and invisible, that makes individuals unique. We strive to be a safe place where regardless of age, color, disability, gender, gender identity, gender expression, family status, national origin, race, ethnicity, or sexual orientation, you are heard, empowered and valued. We believe that every person's unique perspective and experience helps us advance our mission.
How Does NBDF Support Research?
A world without inheritable blood or bleeding disorders begins with research. The organization has invested more than $20 million into research into better treatments and cures for blood/bleeding disorders. Our current research program supports basic science research, innovative investigators, and NIH bridge grants, among others. Through our fellowships, we support the hematologists, nurses, social workers and physical therapists who provide care for people with blood or bleeding disorders and encourage young doctors to join their ranks.
Currently, the organization developing a national research agenda in partnership for the community to ensure that the voice of the people who are most affected by research – the patients and families – remain at the center of scientific progress.
How Does NBDF Support Health Care Providers?
For people with bleeding disorders to receive optimal care, their health care providers need to be knowledgeable about the latest treatments and trends. The Medical and Scientific Advisory Council (MASAC) has been issuing recommendations and advisories on treatment, research and other general health concerns for the community for decades.
At the annual Bleeding Disorders Conference, we provide education to hematologists, nurses, social workers and physical therapists on the latest developments in treatment and care. Through our clinical fellowship program, we encourage researchers within the hemophilia treatment center network to investigate areas that can improve care. Our education extends beyond bleeding disorders specialists – through partnerships with Medscape, we provide bleeding disorders education to pediatricians, OB-GYNs, and other providers so they can recognize the symptoms of a bleeding disorder and help their patients get the care they need.
Where Can I Get More Info?
It's important to give people the tools they need to manage their health and make informed decisions around their care, and live healthy, productive lives. The Steps for Living website provides educational information for all life stages. We created vetted, unbiased educational content on a variety of topics – from gene therapy to mental health – to help affected individuals and their family members thrive. Our educational content is available through webinars, chapter events, and at the Bleeding Disorders Conference.
For specific questions about your bleeding disorder, you can contact HANDI. Our information specialists will be happy to assist you with questions about bleeding disorders
The organization is dedicated to serving all people with a blood or bleeding disorder in the US. We provide online education for people with rare factor disorders, and a conference for people with hemophilia and inhibitors. We work with the Centers for Disease Control and Prevention (CDC) to lower the number of undiagnosed women with bleeding disorders through our outreach campaign, Better You Know. NBDF’s Guías Culturales are Latinx members of the bleeding disorders community who assist other Latinx families in accessing services and healthcare. Are you a student looking to get more involved? Consider applying for the National Youth Leadership Institute (NYLI).
What Is Your Policy Work?
NBDF is committed to ensuring that people with bleeding disorders have timely access to quality medical care, therapies and services, regardless of financial circumstances or where they live. In our history, we have advocated for patient protections including equal access to health insurance for people with pre-existing conditions, the elimination of lifetime and annual caps, and access to FDA-approved therapies. We have proudly fought to protect the Affordable Care Act, as many of the essential health benefits in the act directly affect our community members. Each year, NBDF hosts the largest bleeding disorders advocacy event in the US, Washington Days, in Washington, DC. We also work to ensure the nation's blood supply and blood products remain safe.
On the state level, we work with our chapters to train advocates, identify issues regarding access to care, and train state-based advocacy coalitions (SBACs) to work together to advocate with state legislatures.
How Can I Connect with Others?
Coast to coast, the organization supports a network of over 50 local organizations. These chapters, some of which are independently operated, provide a variety of education and services to people with bleeding disorders. To be a chapter, the organization must meet a number of standards in education, communications, advocacy and services. In addition, chapter staff receive trainings on best practices, fundraising, donor and volunteer management, board development, and communications. Our chapter directory can help you find a chapter near you.
How Can I Get Involved?
We are grateful to the many talented people who volunteer to help our organization by serving on our provider working groups, board of directors, MASAC, and community volunteers. Learn more about how you can make a difference in the bleeding disorders community by visiting our Volunteer Opportunities section. For fundraising opportunities, email Maureen Parsons.
How Does NBDF Prioritize Diversity?
At NBDF our mission is to serve those affected by all inheritable bleeding and blood disorders. We are committed to our employees as well as those we serve. To do so, NBDF seeks and values those qualities, both visible and invisible, that makes individuals unique. We strive to be a safe place where regardless of age, color, disability, gender, gender identity, gender expression, family status, national origin, race, ethnicity, or sexual orientation, you are heard, empowered and valued. We believe that every person's unique perspective and experience helps us advance our mission.
How Do I Make a Media request?
Please call the media line at 212-328-3773 or email Kyla Clark at kclark@hemophilia.org.
Are You on Social Media?
Sure! You can subscribe to our YouTube page, or follow along on Instagram, Facebook, Twitter, LinkedIn, or TikTok.