In 2019, the National Bleeding Disorders Foundation (formerly NHF) conducted a series of listening sessions and guided conversations with Black and African American members of the bleeding disorders community. The sessions were conducted in person at NBDF’s Inhibitor Education Summits and Bleeding Disorders Conference, along with one on one interviews with various healthcare providers.

“We were interested in better understanding any barriers to care that might impact joint health,” said Kate Nammacher, vice president of education for NBDF. “But we discovered so much more.”

One of the clear desires that came out of the sessions, Nammacher said, was a space for Black and African Americans with bleeding disorders to communicate with each other, share their experiences, and give and get support from people who understand them. That prompted the creation of the Black Bleeding Disorders Empowerment Collective, a private group on Facebook.

Participants who join will be able to share stories, ask questions of the community and access educational information. “We know that people who are able to connect online have better health outcomes, so the community support is important,” said Nammacher.