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.
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!
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.
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.
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.
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.
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.
August 12th – Mike Sager, Patient Education Manager with Alexion Pharmaceuticals, will describe tips to facilitate productive conversations you can use at upcoming medical appointments.
August 14th – NF patients and their families/friends are invited to join us at 7pm for a community-building virtual chat!
August 17th – Offering limited bibs to run with NF Northeast for the 2025 Falmouth Road Race!
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!
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.
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!
