My NF Guide: How you can help

Author: NF Network

Published On: 10/02/25

Promising therapies are being developed to treat Neurofibromatosis (NF). These treatments are tested through clinical trials, which are only open to people who meet certain requirements. Each trial has its own specific criteria, which will be different for each trial.  By joining a clinical trial, people with NF can play an important role in helping researchers find better treatments and, eventually, a cure.

One such trial is happening at Mass General. They are close to completing enrollment for adults with NF1, but are still in need of parents of children with NF1, especially those who do not attend NF1 specialty clinics.

If you or your child has Neurofibromatosis type 1 (NF1) and haven't visited an NF Clinic Network (NFCN) clinic in the past year, you may qualify for a research study aimed at improving care during annual check-ups. The study involves completing two online surveys and an optional interview, with a chance to earn up to $150. 

Fill out the pre-screening survey here to get started.

Please remember: Anyone considering participating in a clinical trial should discuss the matter with his or her physician. The NF Network does not endorse or recommend any particular studies. Click here to read more about clinical trials.

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