At the National Hemophilia Foundation’s (NHF) Bleeding Disorders Conference, held virtually this year, NHF president and CEO Leonard Valentino, MD, asked each person to consider their purpose. “When I think about why I go to work every day, the answer is: you, the bleeding disorders community.” That community-centered approach was at the center of his announcement of the creation of a national research agenda for bleeding disorders.
NHF does not conduct research itself; rather it funds researchers through a program of grants and fellowships, including the Judith Graham Pool Postdoctoral Research Fellowship, Bridge Award, and Innovative Investigator award. Each year, NHF distributes nearly one million dollars to fund research.
“It is important that the national research agenda reflects the voices of the community,” said Valentino. NHF will solicit input from members of the bleeding disorders community, including patients and family members, researchers and healthcare providers, government agencies, pharmaceutical companies, and other local and national bleeding disorders advocacy organizations. Further input will be solicited from the community via a survey developed in conjunction with NHF chapter leaders, and from NHF’s Community Voices in Research.
The culmination of the research planning project will be the State of Science Summit (SOS) in May of 2021. Modeled on the National Heart, Lung and Blood Institute’s (NHLBI) State of the Science Workshop on FVIII inhibitors, which sought to develop a coordinated scientific agenda to tackle the issue of hemophilia A with inhibitors, the SOS will bring together stakeholders from all aspects of the bleeding disorders community to define the national research agenda: identifying approximately four research priorities, developing an implementation plan, and establishing a platform that encourages partnerships and collaborations beyond the bleeding disorders community.
“Only together can we create a research agenda that will usher in a new generation of care and perhaps one day, a cure,” Dr. Valentino said. “We need your voice, so stay tuned for requests for your input. Let’s shape the future, together.”
Source: National Hemophilia Foundation