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.
February 22, 2026 – We’re thrilled to bring the Hartford area NF Northeast community together for a night of strikes, spares, and connection! Meet other families and enjoy some fun in a relaxed, welcoming environment.
February 8th – Join us for the 12th annual Cupid’s Chase 5K around Lake Quannapowitt in Wakefield, MA! All proceeds are donated directly to Neurofibromatosis Northeast.
March 28th – Join us for Journey in Focus, a one‑day retreat in Malvern, PA designed for individuals and families affected by NF1. Connect with experts, gain practical tools, and take part in meaningful conversations that support every stage of the NF1 journey.
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,
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!
On October 23rd in New York City, members of the NF Board of Directors proudly presented Dr. Kaleb Yohay with the NF Compassion in Action Care Award. This honor celebrates his
