Let’s Do
NF
Together
NF Network
For over 30 years, the NF Network has been has been supporting individuals with neurofibromatosis and their families by connecting patients with doctors and hospitals, advocating with regional NF communities on national issues, and collaborating with researchers on clinical trial studies. And we won’t stop, not ’til there’s a cure
Neurofibromatosis
Neurofibromatosis (NF) is a highly variable condition of the nervous system that affects almost every organ of the body and each person differently. It refers to three different genetic medical conditions:
- Neurofibromatosis Type 1 (NF1)
- Schwannomatosis (SWN)
- NF2 – related Schwannomatosis (NF2-SWN)
Each involves the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between them and all other parts of the body. Most tumors are non-cancerous (benign), although some may become cancerous (malignant). Currently there is no cure.
Fast Facts
Definition
Group of genetic conditions causing tumors form on the nerves
Affecting
1 in 2,500 births and over 4 Million people Worldwide
Impact
All races, genders, & ethnicities equally
Issue
There is no cure
NF Doctors
Care for individuals with NF varies greatly from person to person and, given the progress nature, from year to year as well. Various types of doctors are often required including neurologists, geneticists, ophthalmologists, surgeons, audiologists, and more.
Advocate
Each year we bring together individuals and patient advocacy groups from across the country to speak as one voice on Capitol Hill to our nation’s lawmakers and convey the need for continued neurofibromatosis research funding. Since 1996 the NF Network Advocacy Program has helped to raise over $400 million. And we won’t stop until there is a cure!
Resources
The NF Network works with doctors, scientists and other experts to gather resources you can trust and use on your NF journey.
NF Heartline
A helpline designed to provide answers and guidance along your journey.
Webinars
A Library of videos hosted by NF experts to inform on various topics.
Network Edge
A science column providing bite-sized summaries of current research & clinical trials.
Inspire Community
An online support community connecting people across the globe.
Community
The NF Network partners with regional community group
NF California
A non profit organization founded in February 2004, providing medical symposiums, educational meetings, family support groups as well as many other key needs for California’s medical and healthcare professionals, NF patients and their families. Meetings are held throughout California. Our focus is also to be involved in advocacy groups and provide support for NF research.
Happening in the Network
Events
Event in the past
tewsat
View Details
2024 NF California – Game Night
Join us to play friendly , free, and most importantly, fun in these games.
View Details
2024 NFNE Pickleball
#NFNortheast is the organization that helps patients through their Journey of Hope.
View Details
News
Partners and Friends
