In 2019, the National Hemophilia Foundation 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 NHF’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 about barriers to care that might impact joint health,” said Kate Nammacher, vice president of education for NHF. “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 Bleeding Disorders and Black Communities, a private online community hosted by HealthUnlocked, a UK-based social health website.
Participants who join will be able to create profiles, 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. “But we also want to give participants access to experts in bleeding disorders who will really listen to their questions and concerns and answer their questions.” She said the forum will host online Q and A’s with healthcare providers and mental health experts who understand the experiences of Black and African Americans and other educational opportunities.
Black and African Americans with bleeding disorders and their family members can request access to the forum by filling out a short questionnaire. All personal information will be kept private and secure by HealthUnlocked.