National Bleeding Disorders Foundation

The National Bleeding Disorders Foundation, formerly known as the National Hemophilia Foundation, is a dedicated organization that strives to find cures for inheritable bleeding disorders and addresses the complications of these disorders through research, education, and advocacy. By enabling people and families to thrive, this esteemed nonprofit aims to make a significant impact in the lives of those affected.

In 2022, the National Bleeding Disorders Foundation announced several new initiatives to identify barriers and improve equitable access to inclusive, evidence-based education for individuals living with bleeding disorders. These initiatives include the Health Equity Through HTC Pilot Project, which focuses on engaging Black and African-American patients, and the development of tool kits for families and healthcare providers. Additionally, the organization launched MASAC for You, starting with the topic of navigating emergency department visits, ensuring that MASAC guidelines are accessible to all. New publications in English and Spanish for Glanzmann's Thrombasthenia and Factor VII (7) Deficiency, as well as VWD Guidelines Summary Sheets, were also created to aid patients in self-advocacy.

The National Bleeding Disorders Foundation's primary goals for its Victory for Women and Better You Know programs include improving awareness of symptoms of bleeding disorders in women and providing education and support for affected women. In 2022, the organization launched a new program, Journey to Know, where women with symptoms join a three-month program to receive more information and support on the path to diagnosis. Over 4,500 women took the Better You Know risk assessment tool, 75% of whom had symptoms of a bleeding disorder, and over 5,700 visited Victoryforwomen.org.

Furthermore, the organization's Steps for Living is a multimedia educational program designed to increase access to age and culturally appropriate information for the management of daily challenges in living with a bleeding disorder. The program aims to redesign and relaunch for 2024, and in 2022, it had over 87,000 sessions. The Education for Empowerment program brings workshops out to local chapter and HTC events, and in 2022, NHF facilitated 68 workshops in English and Spanish, with over 1,300 participants. The National Youth Leadership Institute (NYLI) assists young people from the bleeding disorders community to become well-trained, recognized leaders, providing training, support, and opportunities to provide education to the bleeding disorders community. In 2022, NHF provided trainings to the 16 members of NYLI on topics including public speaking, advocacy, non-profit management, and fundraising. Additionally, the organization developed numerous educational components for its Gene and Innovative Therapies Programming to ensure community members are aware of the latest treatments in the pipeline and how to have conversations with their healthcare providers for the best treatment decisions.