NF Network - A Proud supporter of the UW-Madison NF1 Swine Project

We are optimistic that this research will speed up the development of NF 1 therapies.  Read more
I lost my voice, but help others find theirs

His words did not shock me; I had known for a long time that my voice was failing me. But what he said, with unintended cruel clarity, signaled to me that the moment had come. Later that day I — a 23-year-old Tennessee boy making good in New York City — called my mother and cried.

Participate in NF research

Did you know that there are 167 clinical trials for neurofibromatosis (NF) in various stages of completion? People with NF can play a critical role in the development of new treatments and the search for a cure by participating in clinical trials.

NF Hope Concert expands to NYC

More than 80 people attended the University of Wisconsin's inaugural NF1 Symposium May 3. The event left attendees with "a feeling of hope and When Jeff and Melody Leibow founded the NF Hope Concert in 2011, they dreamed it would be held numerous cities across the country. On May 8 in front of a full house at SubCulture, the first step towards that reality came to fruition with New York City’s inaugural NF Hope Concert.." 

People helping people

In 2013, Jenn Krawchyk, the mother of a young boy, Kyle, with NF1, from Boardman, OH, called the NF Network looking for a way to connect with people with NF in her area and raise funds for NF research. Four years later I find myself in Boardman Park, early on a Saturday morning with a gentleman named “Ron Maxwell, like the coffee.”

Upcoming Events
The mission of the  NF Network "is  to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, and providing outreach through education and awareness while offering hope and support to those who affected by NF."
Will you join with us?