The National Hemophilia Foundation (NHF) is refocusing its mission statement to reflect a renewed emphasis on research and an expanded scope to include inheritable blood disorders.
The newly adopted mission statement reads:
The mission of the National Hemophilia Foundation is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy, enabling people and families to thrive.
“At NHF, we have a vision of a world without inheritable blood disorders,” said NHF President and CEO, Leonard A. Valentino, MD. “Making that vision a reality is rooted in a robust research program designed to close the gaps in treatment that people with blood disorders experience, and support for clinicians and researchers so that people who live with these disorders every day may thrive.”
The refocus reflects NHF’s original articles of incorporation that state, NHF exists to make grants and donations for research and clinical care of hemophilia, abnormal blood conditions and similar ailments.
To reflect this, plans are underway to increase the acceleration of research. A State of the Science Summit hosted by NHF, which will be announced in March, will bring researchers, clinicians, industry partners, government agencies, and affected individuals and families together to create a national research blueprint that will make a lasting impact on the lives of people with bleeding disorders. In addition, NHF also announced a new fellowship, the Jeanne M. Lusher Diversity Fellowship, to encourage a career-long interest in benign hematology among Black, indigenous, and people of color (BIPOC) clinicians and researchers.
Valentino sees research as a key to bolstering NHF’s other core areas of focus. “What we learn from research will help us create more effective educational programs and give us validated information we can use to advocate for access to care.”
The refocused mission statement also changes “bleeding disorders” to “inheritable blood disorders.” But the change doesn’t mean that NHF’s commitment to the bleeding disorders community is going to lessen. “We are dedicated to improving the lives of people with bleeding disorders – a bleeding disorder is a blood disorder,” Valentino said. “And our healthcare providers in HTCs are seeing patients with sickle cell disease, thalassemia, thrombocytopenia, venous thrombosis, hereditary hemorrhagic Telangiectasia (HHT), iron deficiency anemia and others.” Valentino acknowledges that people with some of these rare inheritable blood disorders may not have patient advocacy organizations with the same resources as NHF to provide support, and even where they do have advocacy organizations it is NHF’s intent to partner with and support those organizations in ways that make sense for our mission, vision and values.
“NHF has 72 years’ experience in advocacy for access to treatments and care for our constituents,” Valentino said. “We’re hoping to partner with other organizations that support these inheritable blood disorders and see where there are opportunities for collaborations that could have a real impact.”
The most meaningful change, says Valentino, is the new line at the end of the statement. “People and families affected by blood disorders are at the center of everything NHF does. All of our programs, advocacy and research truly strive towards one goal: allowing people and families to thrive.”