Neurofibromatosis Northeast employs a Patient Outreach Coordinator, who maintains an extensive NF resource center. She responds to all telephone or email inquiries and will assist the patient or family by providing literature, referrals to NF specialists and if requested, introductions to other NF patients and/or families for support.
The Patient Outreach Coordinator is also the Chairperson of the all volunteer NF Families and Community Committee. The committee’s charge is to create a community among NF families, their friends, supporters, medical and allied professionals and other interested individuals and institutions to support the NF Mission.
Over the past twenty eight years, we have built a strong and resourceful NF community in the Northeast. From time to time we host informal receptions to bring together NF patients, family members and medical professionals who enjoy the opportunity (many for the first time) to learn more about NF, and the NFNE organization.
We also encourage those who are interested in discussions with other NF patients and families to join the NF Network Message Board.