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Leading NF Advocacy
Building NF Community

Mission/History

Neurofibromatosis Network was founded in 1988 as a 501(c)3 non-profit organization to join together several independent state and regional NF groups wishing to work together on national projects.

The Neurofibromatosis Network:

  • Promotes federal funding of neurofibromatosis research through the development of a grass roots advocacy program.  Grassroot advocates are individuals affected by NF in some way and work with their federal government representatives to promote the funding of NF research;
  • Works closely with members of the House and Senate to seek increased funding for research through the National Institutes of Health (NIH) and through the Department of Defense Congressionally Directed Medical Research Program (CDMRP);
  • Distributes medical and research updates;
  • Invests in the financial and promotional support of NF research;
  • Supports Camp New Friends, an annual NF Children’s camp;
  • Sponsors educational programs for families affected by NF;
  • Serves as a national referral database for NF clinical care;
  • Assists in developing local NF groups;

The NF Network network provides opportunities for local NF organizations to share experiences.  The network is a dynamic and growing open space for shared resources, development of new tools, and creation of innovative programs.  It brings together groups from around the country to speak as one voice on national issues.