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.
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.
March 5th – Join us to learn more about upcoming summer camp programs for our NF community with Double H Ranch, The Woodlands Camp, and more.
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.
February 14th – NF patients and their families/friends are invited to join us at 9am EST for a community-building virtual coffee chat!
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!
December 18th – NF patients and their families/friends are invited to join us at 7pm for a holiday community-building virtual chat!
March 3rd – NF patients and their families/friends are invited to join us at 7pm EST for a community-building virtual chat!
