The landscape of federal funding for biomedical research is shifting rapidly, bringing both opportunities and challenges for VHL researchers. Here’s an update on recent accomplishments and ongoing hurdles:
Major Federal Funding Sources for VHL Research
VHL researchers have access to two key sources of federal funding: the National Institutes of Health (NIH) and the Department of Defense (DoD).
The National Institutes of Health (NIH)
The NIH supports VHL research both on its Bethesda, Maryland campus (intramural research) and at institutions across the country (extramural research). The VHL Natural History Study, an ongoing protocol, provides treatment to over 1,200 VHL patients at no cost at the main NIH campus.
In February 2025, a new executive policy sought to cap NIH grant indirect cost reimbursements at 15%, significantly lower than the previous average of 35%. These indirect costs cover essential institutional expenses such as facility maintenance, utilities, and administrative support. This reduction could strain research institutions, potentially limiting research output and leading to job losses.
Legal challenges have temporarily blocked the implementation of this cap, but concerns remain. Researchers and institutions warn that cuts could slow scientific progress and harm local economies. Many of the 40 VHL Clinical Care Centers (CCCs) recognized by the VHL Alliance rely on NIH grants, including the University of Pennsylvania, which hosts one of the largest CCCs. A reduction in funding could jeopardize ongoing and future VHL research efforts.
Fortunately, the NIH’s VHL clinical programs remain unaffected by these proposed funding changes and continue to accept new patients. For more information on enrolling in the NIH VHL protocol, contact [email protected].
The Department of Defense and CDMRP
The DoD partners with Congress to allocate research funding for specific conditions, including VHL, through the Congressionally Directed Medical Research Program (CDMRP). Each year, patient advocates must secure legislative support to ensure VHL research remains eligible for these funds, which are earmarked within the CDMRP’s Peer Reviewed Medical Research Program (PRMRP).
This past year, advocacy efforts yielded remarkable success! Nine VHL research applications were submitted, and three received funding totaling over $7 million—an outstanding achievement for the VHL research community.
However, the passage of a Continuing Resolution in March 2025 resulted in a 57% reduction in CDMRP funding for the year. While this significant cut will limit available resources for VHL research, the VHL Alliance remains committed to educating the community about the application process and advocating for future funding opportunities.
How You Can Help Protect Federal Research Funding for VHL
VHL Alliance patient advocates continue to engage with legislators, emphasizing the critical impact that NIH and DoD funding has had on the VHL community.
If you are a VHL patient receiving care at the NIH or a CCC, your story matters. If you are a medical professional treating VHL patients or conducting research on improved VHL therapies, your voice is essential.
“A cut in federal research funding of this magnitude will have rippling effects—not only directly impacting the development of next-generation therapies but also hindering the growth and future of medical science,” says Dr. Ruhee Dere, Associate Professor at Baylor College of Medicine and Co-Chair of the VHL Alliance Research Council. “This affects not only me as a researcher who has received federal funding but also the ability to make novel discoveries, train the next generation of researchers, and ultimately, fulfill our mission to help the patient community.”
For more information on how to turn your VHL experience into meaningful advocacy, visit our webpage VHL Alliance Advocacy.
This Article was brought to you, in part, by Merck
