The National Bleeding Disorders Foundation recognizes that there are disparities in the United States healthcare system, and that applies to people with bleeding disorders. We are working to elevate the voices of lived experience experts to create equitable access to care and quality treatments through several initiatives.
What Is NBDF Doing to Address Disparities in Health Care Access?
NBDF’s health access and strategic innovation department works with lived experience experts, chapter leaders, members of the Medical and Scientific Advisory Council (MASAC) to address the many social determinants of health -- the reasons why certain people don’t have equal access to health care. In 2025, a roadmap for the organization was published that details a many-pronged approach to addressing these inequities.
Addressing Health Literacy
Health literacy – the ability of people to understand information related to their health – is a key issue in achieving health equity. One way that NBDF seeks to address health literacy is by ensuring all of their resources for people with bleeding disorders are available in plain, easy-to-understand language. NBDF’s MASAC for You has distilled some of the most-used MASAC documents and tailored them for non-medical people. Also, many of NBDF’s publications, including MASAC For You, are available in English and Spanish. Steps for Living and HemAware.org are also available in Spanish to better serve the Spanish-speaking members of the bleeding disorders community.
Health Equity Summits
Every other year, NBDF hosts a Health Equity Summit, which brings together people in the bleeding disorders community, health care providers, health equity champions, and industry for a series of educational sessions and informative discussions on how to increase access to care for all. Key takeaways from the 2022 Health Equity Summit and the 2024 Health Equity Summit are available on the NBDF website.
How NBDF Can Help You
It is one of NBDF's goals to make sure all people with bleeding disorders can connect with resources and support so they can lead full and healthy lives. We provide:
- A local chapter network to connect with others who understand
- Educational resources for every stage of life
- The Neil Frick Resource Center for specific questions
- Webinars, conferences, advocacy programs, and research initiatives
Join our mailing list to stay up to date on what NBDF can offer you and your family.
Make a Difference
Your support ensures that NBDF can continue to work to increase health equity, translate important resources, and work with chapters and other organizations to ensure that everyone in the bleeding disorders community has the health information and access they need.