The National Cancer Institute (NIH) is currently recruiting individuals and families affected by Neurofibromatosis for two separate virtual research studies. Each study focuses on improving quality of life and strengthening future research for the NF1 community.

Your lived experience can directly shape what comes next.

Study 1: Improving Measures for Visible Tumors and Appearance Concerns

This study is working to improve how future NF1 clinical trials measure the impact of visible tumors and appearance-related concerns. Researchers are validating tools to ensure they truly reflect what matters most to people living with NF1.

For more information, contact:
Dr. Staci Martin
staci.martin@nih.gov

Study 2: Evaluating Acceptance and Commitment Training (ACT)

The second study is evaluating a non-pharmacological intervention called Acceptance and Commitment Training (ACT). 

For more information, contact:
paige.little@nih.gov
milly.curlee@nih.gov

Why This Matters

Advances in NF1 care aren’t only about medications — they’re also about improving quality of life. By participating in these studies, you can help ensure that future clinical trials and supportive interventions reflect the real needs of the NF1 community.

Your voice, your experience, and your perspective matter.

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