FOR IMMEDIATE RELEASE
September 12, 2021 — New York City —The State of the Science Research Summit (SOS), hosted by the National Hemophilia Foundation, kicked off earlier today. SOS brings together the top minds in medicine, research, education, and advocacy for engaging and thought-provoking sessions that will answer the inheritable blood disorders community most pressing questions.
This first-of-its-kind virtual community dialogue will run from September 12-15, 2021. In bringing together voices from across the community, the SOS aims to find specific and actionable activities that will be published in a National Research Blueprint early next year.
“There has been tremendous progress in the diagnosis, treatment and life-long management of inheritable blood disorders. Yet we can all agree that there is much more to be done,” said NHF President and CEO, Dr. Leonard A. Valentino. “With improved technologies and greater attention to the community, there is tremendous opportunity to foster dramatic changes that can advance care in a more holistic and equitable way. This is exactly what the State of the Science Research Summit hopes to kick start.”
To inform the conference sessions and topics of importance, NHF conducted a series of focus groups, listening sessions, and surveys to collect input from a wide range of community members (patients, caregivers, researchers, allied healthcare professionals, chapters, partner organizations, industry partners, etc.). With community input, NHF convened a steering committee and working groups that represent diverse disciplines of health professionals as well as patient representatives to identify common themes and opportunities reflecting the community’s input.
The community is invited to join NHF and its partners for the SOS which will feature interactive panel discussions and opportunities for comments and questions. Registration will remain open through September 15; it’s free to sign up at hemophilia.org/summit.
For nearly 75 years, The National Hemophilia Foundation (NHF) has championed research, education, and advocacy for inheritable blood disorders. NHF is dedicated to finding better treatments, preventative measures, and cures for inheritable blood disorders. Founded by patients in 1948, NHF’s impactful programs and initiatives are made possible through the support of a nationwide network of chapters, as well as individuals, partners, and a cooperative agreement with the Centers for Disease Control and Prevention (CDC). Learn more at hemophilia.org.