CTF is steadfast in advocating for federal research funding that drives progress for NF patients. We meet regularly on Capitol Hill and work strategically to ensure NF research remains a priority. Thanks to these efforts, the Congressionally Directed Medical Research Program (CDMRP) has provided millions of dollars annually for NF research – supporting critical discoveries, strengthening the NF Clinical Trials Consortium, and getting treatments to patients faster.
We collaborate closely with the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the National Center for Advancing Translational Sciences (NCATS), and are actively building relationships with the Advanced Research Projects Agency for Health (ARPA-H), the Patient-Centered Outcomes Research Institute (PCORI), and the White House Office of Science and Technology Policy (WHOSTP) to expand research opportunities and funding.
Together with other key NF research funders and advocacy organizations, we work to ensure that NF remains a national priority, uniting efforts to drive scientific progress and patient impact.
Our approach is bipartisan, strategic, and focused on ensuring federal, donor, and investor dollars are used wisely – supporting high-impact research, avoiding duplication, and promoting collaboration, including open-data sharing. This strategy has delivered significant breakthroughs: including the FDA approval of Koselugo; Brigatinib’s advancement to Phase 2 trials due to our Synodos collaborative model; and the next phase of biomarker research to save lives and make NF more predictable. As a result, pharma and biotech interest in NF is surging, driving new partnerships that are accelerating drug development and expanding treatment opportunities.
While headlines may shift, our work remains steady. We are committed to protecting and growing NF research investment and ensuring these advances reach the patients who depend on them. Stay tuned – your support strengthens this effort every step of the way.
