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Join the NF Registry – New Video

By April 10, 2023December 4th, 2023Video

The NF Registry is a patient-driven resource for accelerating research and finding treatments for all forms of NF, a group of genetic disorders that cause tumors to grow on nerves. It is the most efficient way to raise awareness for NF, expand the NF community, and help end NF. Joining the NF Registry is easy and will make an important difference in the fight against NF. Please join the NF Registry today at

Are you an existing NF Registry member? This May, the Children’s Tumor Foundation asks existing NF Registry members to complete the Healthcare Access Survey. This once-a-year survey asks about you or your child’s NF care during the last year. The survey is available only during May NF Awareness Month. All responses are anonymous, and you will not be asked about the doctors you visit. Just login to your NF Registry account and select “Clinician Performance Surveys.” Need help? Email us at

– The NF Registry is very, very important to me.

I can remember the first time that I started

getting involved in the Children's Tumor Foundation,

and I can't remember who told me,

but the first thing they said is to please register.

– One of the reasons to join the NF Registry

is you get to hear about

all these cool opportunities

that are for drug trials

or research opportunities.

– Your information goes into the registry bank,

and not only are they making a difference for you,

but they are also making a difference

for every single person that has NF.

– I think everyone should join the NF Registry

because first of all, it doesn't hurt.

It doesn't cost you anything.

It doesn't take any time.

You just get emails that tell you

about really cool research opportunities

that oftentimes give you benefits,

whether that be money or trips to different cities,

and you get to be a part of their research

and give them data that can help them develop new drugs,

that can help you, that can help other patients with NF.

Even if you don't really feel

like it would help you personally,

knowing that it'll help someone else with NF,

and knowing that they could be a part of a trial

that could help you, it's we're all a family,

so whatever you do can help someone else just like yourself.

– So every single person that's sitting out there

that has NF, that is not sure what to do,


and let's make a difference for NF.