Contact Information
Who We Are
Sponsors discussion groups on neurofibromatosis for individuals, families and friends. Holds informational meetings with speakers which include an interpreter for the deaf. Offers physician referral and peer counseling. Lends equipment, provides newsletter and printed materials.
Neurofibromatosis is extraordinarily complicated. It comes in many forms, is often undiagnosed or misdiagnosed, and presents in a myriad of forms. Yet, it is the most common disorder currently classified as a "rare disease".
Agency advocates programs to promote federal funding for NF research; offers public dissemination of medical and scientific information about NF; offers national referral database for NF clinical care; and more.
{Languages: Agency provides interpreter for the deaf at meetings.}