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THE NATIONAL NEUROFIBROMATOSIS FOUNDATION

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Mission Statement: The National Neurofibromatosis Foundation, Inc. (NNFF) is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).

Towards this end the Foundation:


  • Sponsors scientific research aimed at finding the cause and cure for both types of neurofibromatosis, NF1 and NF2.
  • Promotes the development of clinical activities, which assure individuals with neurofibromatosis ready access to the highest caliber of medical care.
  • Develops programs that will increase public awareness of neurofibromatosis
  • Provides support services for patients and families with accurate and comprehensive information about neurofibromatosis, with support group activities and referrals to qualified physicians and healthcare professionals.
 
What is NF?  The neurofibromatoses (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body. It also leads to developmental abnormalities. For example, individuals with NF have a higher incidence of learning disabilities.
 
A variety of terms are used to refer to NF

In 1882, NF was first delineated in the medical literature by Dr. Friedrich von Recklinghausen and was so known as Von Recklinghausen's Disease for many years.

Phakomatosis, from the Greek word "phakos" (meaning birthmark), refers to several disorders, including NF, characterized by birthmarks.

Neurocutaneous Disorder refers to any one of several disorders, of which NF is the most common, which affect the skin and the nervous system.

  Types Of Neurofibromatosis

Neurofibromatosis (NF) has been classified into two distinct types: NF1 and NF2.

Neurofibromatosis 1 (NF1), also known as von Recklinghausen NF or Peripheral NF, occurring in 1:4,000 births, is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Neurofibromatosis 2 (NF2), also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:40,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

 


Source of all above information: The National Neurofibromatosis Foundation Official Website

For more information on programs, membership and donations please use the link to the official site located in the left column. Thank you!


 
 NATIONAL NEUROFIBROMATOSIS FOUNDATION
95 Pine Street, 16th Floor  •  New York, NY 10005
phone: 800-323-7938 • fax: 212-747-0004

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