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.
Progress Toward the Community NRB
Since we established this effort, we've made considerable progress thanks to many participating members of the community, including patients, caregivers and family members, physicians and researchers, chapter leaders, community advocates, and industry. Thank you to everyone who has joined us on this journey and we look forward to continued progress toward our goal! Click here to read a special Progress Update toward the NRB.
"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 Participant
Read more from NHF president and chief executive officer Leonard Valentino, MD, about how this blueprint can make a meaningful difference.
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.
- Bookmark or Subscribe to NHF’s YouTube page where you can access the recordings of the State of the Science Research Summit to review the work of well over 150 community members in identifying key research priorities for inheritable bleeding disorders.
- Watch the 2021 State of the Science Research Summit.