March 29th - An in-person educational event geared toward providing valuable resources, insights, and a sense of community for caregivers of NF1 patients.
Join us for the Neurofibromatosis Educational Symposium on Saturday, April 5th, from 10:00 AM to 2:00 PM in Buffalo, NY. Hosted by John R. Oishei Children’s Hospital, Roswell Park Cancer Institute, and UBMD Pediatrics, this event will provide valuable insights into neurofibromatosis, featuring expert speakers and discussions. đź“Ť Location: Conventus, Alford Auditorium (2nd Floor), 1001 […]
April 22nd - Mike Sager, Patient Education Manager with Alexion Pharmaceuticals will be sharing helpful resources and strategies to use when advocating for those we care for with their medical team and beyond.
May 20th - In addition to general information about the NF clinics and providers available throughout the northeast, NF providers from Columbia University Irving Medical Center (CUIMC) and the UPMC Children's Hospital of Pittsburgh NF clinics will share details about their clinical teams and NF programs.
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:Â 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 […]
