Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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You are here: Home / Archives for Medical & Science News from Neurofibromatosis Northeast

Latest NFNE Medical & Science News & Information

NetworkEdge

The NetworkEdge is a timely review providing a summary of recent highlights from NF research and clinical trials. It is sponsored by the NF Network in partnership with NF Northeast. The NetworkEdge is presented in bite-sized pieces, allowing you to easily find and focus on those topics of most interest to you, whether it is […]

Educating your child during COVID-19 Quarantine

NF Northeast Board Chair, Lori Ryan sat down (via Zoom) with the Educational Specialist at Boston Children’s Hospital, Meredith Chambers, MEd to discuss tips on educating your NF Child during this COVID-19 Quarantine. Check it out!

First FDA Approved Therapy for NF

The U.S. Food and Drug Administration has approved Koselugo (selumetinib) for the treatment of pediatric patients, 2 years and older, with plexiform neurofibromas – a type of tumor that occurs in patients with neurofibromatosis type 1 (NF1). Koselugo is a MEK inhibitor which was co-developed by AstraZeneca and Merck & CO. Neurofibromatosis (NF) is a […]

Study to Understand Chronic Pain and Work Barriers in NF Population

Dr. Frank Buono, PhD is an Associate Research Scientist in Psychiatry at Yale School of Medicine. As an individual personally affected by NF2, Dr. Buono has conducted NF research through a DOD-funded study to evaluate whether a mobile phone application can reduce pain in adults with Neurofibromatosis Type 1 (NF1). His new study below focuses on the […]

Health Supervision for Children with Neurofibromatosis Type 1

April 22, 2019 – David T. Miller, MD, PhD, FAAP, Debra Freedenberg, MD, PhD, FAAP, Elizabeth Schorry, MD, Nicole J. Ullrich, MD, PhD,David Viskochil, MD, PhD, Bruce R. Korf, MD, PhD, FAAP Neurofibromatosis type 1 (NF1) is 1 of the most common inherited genetic conditions, affecting approximately 1 in 3000 individuals.1 NF1 is a multisystem […]

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Upcoming Events

  • Steps2Cure NF VIRTUAL Walk & Run on May 1, 2021 7:00 AM
  • NF Northeast Coffee Chat on May 9, 2021 9:00 AM
  • NF Northeast Coffee Chat on June 13, 2021 9:00 AM
  • NF Northeast Coffee Chat on July 11, 2021 9:00 AM
  • NF Northeast Coffee Chat on August 8, 2021 9:00 AM

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NF Northeast Continues to Need Your Support

Due to the COVID-19 pandemic most of our events have been cancelled or postponed. But, our programs that serve NF patients and families have not stopped. We continue to be here for our community and continue to need your support. Thank you!

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Events

  • Steps2Cure NF VIRTUAL Walk & Run on May 1, 2021 7:00 AM
  • NF Northeast Coffee Chat on May 9, 2021 9:00 AM
  • NF Northeast Coffee Chat on June 13, 2021 9:00 AM
  • NF Northeast Coffee Chat on July 11, 2021 9:00 AM
  • NF Northeast Coffee Chat on August 8, 2021 9:00 AM

College Scholarship Application

NF Northeast offers college scholarships for individuals who have neurofibromatosis and are … [Read More...]

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