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The Children's Tumor Foundation was founded in 1978 by Dr. Allan Rubenstein , Lynn Courtemache Shapiro and Joel Hirschstritt . Originally named ''The National Neurofibromatosis Foundation'', the Foundation changed its name in effective January 1 , 2005 . The Foundation is incorporated under the non-profit laws of NY and is a 501(C)3 organization. The Foundation is registered in all 50 states, with active Chapters and Affiliates in 28 states.

The mission of The Children's Tumor Foundation, is to:

  • Fund and encourage research and the development of treatments and cures for Neurofibromatosis types 1 and 2, Schwannomatosis and related disorders (hereafter collectively referred to as "NF");

  • Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information;

  • Assist in the development of clinical centers, best practices and other patient support mechanisms (but not including direct medical care) to create better access to quality health care for affected individuals; and,

  • Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population's understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public and private sources.


The Foundation hosts discussion boards and chat rooms on their website, as well as extensive information on clinical and research topics, local activities and other programs.


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