June 24th - Mike Sager, Patient Education Manager with Alexion Pharmaceuticals, will be sharing helpful resources and strategies for caregivers to use when transferring from pediatric to adult NF healthcare providers.
August 12th - Mike Sager, Patient Education Manager with Alexion Pharmaceuticals, will describe tips to facilitate productive conversations you can use at upcoming medical appointments.
September 30th - Carey Pink, Board Certified Music Therapist, will be sharing information on the neurological and psycho-social benefits of music therapy for individuals living with NF.
November 4th - Devorah Segal, Associate Director of the Comprehensive Neurofibromatosis Center at NYU Langone Health, will discuss the latest guidelines and therapies for plexiform neurofibromas.
Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. Hearing Loss 101 and Coping Strategies: Are you or a loved one experiencing hearing loss? Hearing health is incredibly important and can affect people living with neurofibromatosis, schwannomatosis, and […]
Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. Are you a parent or caregiver of a child living with NF? Please join us for an engaging discussion with Dr. Karin Walsh, who will discuss developmental, cognitive, and social-emotional challenges […]
Join us for our Tuesday Takeaways, a one-hour educational lunchtime session, geared towards sharing relevant updates and educational materials with our NF community. These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. Are you familiar with the NF Collective? Join us to learn more about this […]
NF Northeast is hosting a three-part miniseries that delves into topics related to our schwannomatosis (SWN) community. SWN experts will shed light on the importance of well-being, pain management, and understanding in-depth genetics for individuals living with schwannomatosis. Join us for one or all of these engaging discussions. Session 1: Tuesday, January 27th, 6:30-8:00 pm EST […]
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.
Join us for a discussion with Dr. Rebecca Brown, Director of the UAB NF Clinic, and Dr. Brian Mayrsohn, Founder of Maywell Pain Management. They'll explore a holistic, innovative approach to comprehensive pain management for individuals living with schwannomatosis (SWN). Monday, August 10, 2026 6:30 PM to 8:30 PM EST Virtual Event (Zoom) Register Here
