We know that receiving a diagnosis of NF can be overwhelming and a lot to digest all at once. What is most important to understand is that you are not alone.
Newly Diagnosed?
What is NF?
NF refers to a group of genetic conditions that cause tumors to grow on nerves throughout the body. NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2, or NF2. NF impacts everyone differently and may lead to blindness, deafness, bone abnormalities, disfigurement, learning challenges, disabling pain, or cancer.
It’s important to know that NF is genetic. It’s not caused by anything you or your family did. NF affects all populations equally, and while there’s no cure yet, the Children’s Tumor Foundation is driving drug discovery toward more treatments and quality health care that you can trust.
Understanding NF
We're Here for You Every Step of the Way
Understanding a diagnosis of NF can feel overwhelming, but you’re not alone. The Children’s Tumor Foundation (CTF) is here to provide guidance, resources, and support as you begin this journey.
Learn more about the type of NF that affects you or your loved one by visiting these dedicated pages:
- Neurofibromatosis type 1 (NF1)
- NF2-related schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2
- Schwannomatosis (SWN)
Download one of our NF fact sheets, infographics, or brochures below (additional resources and languages available in the Resource Library).
We Can Help You Find an NF Specialist
We understand how difficult it is to find healthcare professionals who have experience diagnosing and caring for NF patients. We are constantly working to expand our NF Clinic Network and add to the list of NF specialists available across the country.
Find a Doctor
You're Not Alone In This Journey
Hello! I’m Kate Kelts, a registered nurse and Director of Patient Education and Engagement at CTF. I know how confusing the first weeks after a diagnosis can be—and how important it is to feel like someone’s in your corner. If you ever want to ask me something specific, please send me an email using the button below.
Big Questions - YouTube Series
Also, I suggest checking out our Big Questions about NF series. In this video series, I break down the facts you need to know and provide answers to the questions patients and families ask most often; from “What is NF?” to “Will I lose my hearing?” and beyond.
When the Time is Right - Get Involved
National programs like Shine a Light NF Walk, NF Endurance, and Cupid’s Undie Run are great ways to empower yourself and your community in the fight for treatments and a cure for NF. It is also a way to meet others in your local NF community.
Learn More
When You're Ready, Consider Joining the NF Registry
Research is the key to diagnosing and treating NF. And the NF Registry is the key to research. If you have been diagnosed with any form of neurofibromatosis (including NF1, NF2-SWN, and SWN), or if your child has NF, unite with thousands of others with NF and join the NF Registry today.
When you sign up for the NF Registry, you can learn about and participate in advanced scientific research on all forms of NF. There are many more benefits to joining the Registry, simply visit the page in the link below.
Learn More
Consider Attending Our NF Summit
Connect with other NF patients and families, get support, and learn from NF experts at our annual NF Summit or at one of many NF symposiums held around the country.
Learn More
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