NBDF is committed to addressing gaps in knowledge that can improve the lives of people affected by inheritable bleeding disorders, ensuring that the lived experience drives and influences the research process, and promote equity, diversity, and inclusion so that research findings includes all.
To do that, we asked you what your experiences are, and listened carefully to your answers. Since summer 2019, we have conducted focus groups, listening sessions, and a broad community survey to capture individual, caregiver, and family input.
As we work to develop the blueprint, individuals with bleeding disorders work alongside healthcare providers, researchers, and other subject matter experts to ensure a focus on the issues that are most relevant to the people and family members who live with these conditions.
"As someone living with a rare bleeding disorder, it’s exciting to be involved in discussions about research that could benefit my life. I work in healthcare in an urban environment, and see so many opportunities to improve equal access to care for people with these and many other disorders.”
– Esmeralda Vazquez, Steering Committee patient representative
A series of virtual listening sessions were conducted in collaboration with the Center for Information and Study on Clinical Research Participation (CISCRP), and Tufts University Center of Study of Drug Development, with diverse groups representing adults with bleeding disorders, caregivers, patient organizations, chapter and member organization directors, healthcare providers, and industry representatives.
Important themes emerged from the sessions, reflecting some common interests and needs from across the community.
“Challenging aspects of living with a bleeding disorder still need more research focus, especially mental health given the social emotional, and physical challenges faced in everyday life.”
– Listening Session Participant
A cross-community survey was developed by and administered through NBDF’s chapters and Hemophilia Federation of America (HFA) member organizations to people with bleeding disorders and their family members. The survey was also distributed through NBDF’s networks to healthcare professionals.
Special thanks to all those who participated in the survey. Your perspectives on priority areas for research are informing the blueprint’s research priorities.
NBDF’s Community Voices in Research
NBDF’s community-powered registry, Community Voices in Research (CVR), gathers important information from nearly 1000 community members to help researchers better understand how bleeding disorders affect individuals and their family members across the lifespan. This rich community tool continues to grow; click here to learn how to join.