NF Summer Camps Information Session
March 13th – Join us to learn more about upcoming summer camp programs for our NF community with Double H Ranch, The Woodlands Camp, and The Hole in the Wall Gang Camp!
NF Northeast is the organization that helps patients through their Journey of Hope.
A diagnosis of NF1, NF2-related schwannomatosis, or schwannomatosis can happen to anyone at any age and at any time.
Our Vision: A world where the burden of neurofibromatosis does not exist.
Our Mission: To bring hope to those affected by neurofibromatosis and allied disorders.
What is NF?
Neurofibromatosis, pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. NF affects all races, all ethnic groups and both sexes equally. NF affects more people worldwide than cystic fibrosis and muscular dystrophy combined!
Who We Are
NF Northeast is a highly regarded resource for patients, physicians and scientists. We have provided over $3 million in research grants, and through our advocacy, have been pivotal in generating over $600 million in federally funded NF research. We are known as the “organization with the heart” because ours is a strong and caring community that provides support to newly diagnosed patients and their families.
For Patients & Families
Being faced with a diagnosis of NF can be extremely overwhelming. NF Northeast has created programs and resources to help patients and families cope with the challenges that come with NF. Our approach is simple: Science, Solutions, Support. We hope that you will find comfort in knowing that NF Northeast is with you every step of the way.
For Researchers
NF Northeast is committed to advancing biomedical research in fields relevant to neurofibromatosis and has been funding research proposals since 1990. To date, we have granted close to $3,000,000 to fund proposals from researchers or institutions both within and outside of the northeast United States. Fields of research include basic science, translational, and applied clinical trials.
How to Get Involved
There are a number of ways to support the patients, families, researchers and others looking to fulfill our mission of hope and progress. Donations; community networks; fundraising campaigns; third-party events; creating awareness; community outreach and many more.
News & Events
NF Northeast is involved with numerous events every year involving hundreds of volunteers, families, organizational sponsors, and other supporters. We raise awareness, provide opportunities for positive action and raise funds that support our many goals, programs and research. In addition, we strive to let you know about important news and progress that give hope to our entire community.
Upcoming Events
NYC NF Meet Up
March 22nd – Join NF Northeast in NYC for an NF Meet Up! Meet other NF patients and connect over food, drinks, and fun at Clinton Hall.
Family Bowling Night – Boston
We’re thrilled to bring the Boston area NF Northeast community together for a night of strikes, spares, and connection! Meet other families, share experiences, and enjoy some fun in a
Latest News
SpringWorks Therapeutics Gets FDA-Approval for NF1 Plexiform Treatment
We are incredibly excited to announce that Gomekli (mirdametinib) has been FDA-approved for the treatment of NF1-related plexiform neurofibromas in both adults and children!
Coast to the Cure 2025 – Save the Date!
Join us on Saturday, September 6 for Coast to the Cure NF. It is more than just a ride—it’s a movement of hope, resilience, and community. Now in its 14th year, this annual cycling event empowers riders to pedal with purpose, raising vital funds for patients and families affected by neurofibromatosis (NF) and its allied disorders.
Steps2Cure NF Walk/Run Series 2025
We’re back for another year of Steps2Cure NF fundraising walks! With the addition of two brand new walks this year, we are now offering NINE Steps2Cure NF events taking place across the northeast—find the walk closest to you!