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Patient Support

Chapters and Affiliates provide support to persons with NF and those affected by NF through referrals for quality medical care, the distribution of information, and by hosting Support Groups. Contact information is listed under the "Activities by State" pages.

Joining a Support Group

A Support Group is a meeting for persons with NF, and persons whose lives have been affected by NF. It is an opportunity for people to gather to share experiences and perspectives, and to learn from one another. Often, a guest speaker will discuss a relevant topic such as learning disabilities, or genetics. In addition to the informational aspect, a Support Group provides a social experience as well. If you are interested in participating in a Support Group, please contact your local Chapter President or Affiliate Representative.

If one does not exist in your area, please contact the Foundation at (212) 344-6633 ext. 245 or via email at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Public Education and Awareness

Chapters and Affiliates educate the general public as well as the NF community, including patients, families, and those in the medical profession, through mailings of literature, participation in health fairs, poster campaigns, PSAs, newspaper articles, and often, sponsoring a Medical Symposium.

Fundraising

Members of Chapters and Affiliates plan fundraisers to fund patient support, public education and awareness, and to support research for effective treatments and a cure. Individuals within states with Chapters and Affiliates, as well as those without, will often host a fundraising event as well. The events take many forms; they are only limited by the creativity of the organizer(s). Samples of some recent events include Golf Tournaments, Walk/Runs, Concerts, Theatre Nights, Dance-A-Thons, even a Kick-A-Thon at a local Karate Academy!

If you are interested in hosting a fundraiser, please contact your local Chapter President or Affiliate Representative, contact our office at (212) 344-6633 ext. 245 or via email at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . The National Office is available to assist you in your efforts.