About Us

Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and the development of local NF organizations through: 

  • Grass roots advocacy programs to promote federal funding for NF research,
  • Public dissemination of medical and scientific information about NF,
  • Financial and promotional support of NF researchers,
  • The publication of educational materials for distribution to those affected by NF,
  • A national referral database for NF clinical care,
  • The support of emerging local NF groups,
  • Growth opportunities for existing NF groups and their facilitation of networking,
  • Creating awareness of NF and its effects to health care professionals, government authorities and the general public.

Neurofibromatosis Network was founded in 1988 by several strong local NF organizations wishing to establish a national NF organization which allowed for autonomy within the individual organizations as well as collaboration on activities that were national in nature. 

For more about the NF Network, please click here!



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