Your voice has the power to impact public policy and promote action to find a cure for NF.
Our Fight Continues
On March 18, 2025, we received devastating news: NF research funding through the Congressionally Directed Medical Research Program (CDMRP) has been eliminated for Fiscal Year 2025. Last year, this federal program provided $25 million for NF research. NF is not alone in this setback; other disease areas also saw funding cuts, but that does not make this any less of a loss for our community.
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Join the Movement
We believe ending NF will take a wide-range of collaborative partnerships, including coordinated efforts with researchers and scientists, educational institutions, clinics and hospitals, industry and the private sector, non-profit organizations, patients and families, and the government. Although we firmly believe we must do our part in funding and coordinating NF research, we also understand that the federal government plays a very unique and irreplaceable role in supporting these efforts.
Since 1998, CTF leadership has spent significant time in our nation’s capital to advocate directly with key Members of Congress and Executive Branch officials on behalf of a community working to find a cure for NF. We provide updates on the latest discoveries resulting from government investments in NF research and discuss ways the government and the non-profit sector can partner to help support and streamline NF research moving forward. We also highlight the Foundation’s community-based efforts that strengthen us as individuals facing NF through our friendships with one another.
Patients Help FDA Understand Life with NF
In the spring of 2024, a group of six patient representatives of the NF1 community met virtually with the FDA to share their perspectives on living with NF1 and cutaneous neurofibromas (cNFs) as part of the Patient Listening Sessions (PLS) FDA program. Patient listening sessions are an opportunity for the FDA to hear from the NF community directly.
This is the second time the Children’s Tumor Foundation coordinated a Patient Listening Session. The first, in 2019, highlighted the experience of NF patients broadly, with a particular focus on plexiform neurofibromas, This meeting, on May 21, 2024, aimed to shed light on the lived experiences of patients with cNFs, an often under-appreciated manifestation that is present in 95% of NF1 patients. Whereas cNFs have been historically considered a “cosmetic” issue, recent studies have brought to light the fact that cNFs strongly impact quality of life (causing pain, itching, and significant social distress) and remain a top priority for the NF1 community.
2024
2019
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