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95 Pine St
16th Fl

New York
New York 10005

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Programs: The Children's Tumor Foundation provides research grants for NF research. To date Foundation-sponsored research has identified the NF1 and NF2 genes, facilitated development of a direct gene test, and explored the link between NF and learning disabilities. The Foundation sponsors a summer camp for children and teenagers affected by NF. The Foundation provides extensive educational information to the public and medical professionals worldwide. It maintains the www.ctf.org web site, bulletin boards and chat rooms, offers a toll-free information line, and educational materials on a variety of NF-related subjects.

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 healthcare 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.

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When our family first learned that our daughter (who was 4 months old at the time) had NF, we were overwhelmed. The internet had precious little accurate information about NF that was not sensationalized and we were emotionally drained after seeing what might possibly be her bleak future. However... more »
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