In recent years, the inherited bleeding disorders community has seen significant advancements in care, thanks to new medicines and technologies, and improved diagnostics. Yet there are still important and persistent gaps in care today, particularly for those with rare disorders and underserved populations, such as women with bleeding disorders.
NHF has taken the lead on a community-driven journey to shape the future of research for bleeding disorders. Our goal is to establish a clear understanding of the most pressing issues challenging people and families with bleeding disorders. This broad effort aims to bring the experiences of people who live with bleeding disorders to the forefront of transformational research and examine where research can have the most community impact.
There are a lot of opportunities for research to understand more about the experience of living with a bleeding disorder, and to make lives better until we can find a cure. – Listening Session Participants
How can you participate?
- Many of you offered your thoughts on research priorities as part of the Community Survey in early 2021. Thank you for your participation, view survey results here.
- If you haven’t already, please consider joining Community Voices in Research (CVR) to continue to provide critical data on the community’s most pressing needs.
- Follow NHF for progress updates. Follow NHF on Facebook, Twitter, and LinkedIn.
- The community can participate during the panel discussion by submitting questions and comments through the live chat.
- Save the date! We encourage you to participate in the State of the Science Research Summit and join the dialogue to define the research blueprint.