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.
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.
Join us Tuesday, July 7th at 7:00 PM for a virtual NF coffee chat! Connect with others in the NF community for relaxed conversation and support. We hope to see you there!
September 19th – Join us for our 15th annual Coast to the Cure NF, a cycling event that empowers riders to pedal with purpose—raising vital funds for patients and families affected by neurofibromatosis (NF) and its allied disorders.
Join us Tuesday, August 11th at 7:00 PM for a virtual NF coffee chat! Connect with others in the NF community for relaxed conversation and support. We hope to see you there!
We are incredibly excited to announce that Koselugo (selumetinib) has been FDA‑approved for adults with NF1‑related symptomatic, inoperable plexiform neurofibromas (PN)! Koselugo is an oral MEK inhibitor developed by Alexion,
Qinglan Ling, PhD Assistant Professor UMASS Chan Medical School We are SO excited to celebrate Dr. Qinglan Ling, one of this year’s recipients of the 2025 NF Northeast
Find the most recent copies of our NF News newsletter, which feature community highlights, organizational updates, upcoming events, and more!!
