Children's Tumor Foundation, The (CTF)
*Provides accurate and current information regarding neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis to patients, families and medical field
*Offers an online healthcare provider directory of doctors who specialize in neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis linked to the NF Collective
*Manages the NF Registry website where people with NF fill out an anonymized survey about symptoms and experiences on a yearly basis to assist with research and education; join on the website
*In partnership witih Indiana Univerisy CTF manages a Human tissue biobank of NF1, NF2, and schwannomatosis tissue samples; link on website to reqest access for research or to donate
*Holds an annual no-cost summer camp for teens and young adults ages 12 to 21 living with neurofibromatosis (NF) third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah
Services: Camps, Disease/Disability Registries, General Health Education Programs, Health Care Referrals, Organ and Tissue Banks