A world where the burden of neurofibromatosis does not exist.
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 (as Neurofibromatosis Mass Bay Area) by a group of people who were in some way affected by the genetic disorder known as neurofibromatosis (NF).
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.
Neurofibromatosis Northeast is affiliated with the national organization, The NF Network.
Fundraising 5% Management 15% Programs 80%
We have twice been featured in the Catalogue for Philanthropy where we are described as “a highly efficient and worthy medical research charity in which you, too, can make a difference.” see What We Do
For more information about our financials, please see Guide Star.
We are a prominent voice on Capitol Hill, and as a direct result of our advocacy the United States Congress has appropriated over $600 million for federally funded NF research since 1996. See What We Do.
Using a Peer Review Grant Process we provide support to NF clinicians and researchers who may subsequently apply for larger grants from the US Army NF Research Program (CDMRP) or the National Institutes of Health NIH.
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 fortunate to have many loyal volunteers.
Director of Operations and Events
|Unfortunately, due to the COVID-19 pandemic, NF Northeast was forced to furlough some of its employees. We hope that this reduction in staff is only temporary. Please be assured that the programs of NF Northeast are continuing at this time, and we are still here to be a resource for NF patients and their families.|