Nuerofibromatosis NE

Cause Area

  • Children & Youth
  • Community
  • Education & Literacy
  • Health & Medicine
  • Sports & Recreation



Organization Information

Mission Statement

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. Patients and families are at the heart of NF Northeast’s mission. We provide advocacy, support, and awareness while promoting research and enhanced clinical care.


Neurofibromatosis Northeast is a non profit 501(c)(3) organization incorporated in 1988.
In recent years the name Neurofibromatosis Northeast was adopted to better describe the area we serve: Massachusetts, Maine, New Hampshire, Vermont, Connecticut, Rhode Island, Pennsylvania, New Jersey and New York. Through support of NF Clinics including Massachusetts General Hospital, Boston Children’s Hospital and Albany Medical Center we help provide services and resources for NF patients and families. We are dedicated to making neurofibromatosis a household word and have recently launched a comprehensive public awareness campaign #TheWordIS.NFNE raises 70% of our funds at events, we receive no direct government support. We rely on corporations, foundations, and individuals.
NFNE is governed by a Board of Directors and grateful for our volunteers.
We participate in many annual events such as our Golf Classic, Golf Tournament, Coast to the Cure bike ride, Falmouth Road Race, Steps2Cure, and our Lake Quannapowitt walk.


Would you recommend Nuerofibromatosis NE?
0 reviews Write a review

Report this organization