The Children’s Tumor Foundation (CTF) is dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis (NF) for which treatments don’t exist because the disease is unpredictable and affects each patient differently. NF can cause symptoms ranging from barely noticeable pigmented areas on the skin to painful tumors that can’t be removed and that can also be fatal.
In 2012 CTF established the NF Registry in an effort to collect specimens from surgical procedures or posthumously so that qualified researchers have access to the tools they need to find therapies for the disease. Patients in the registry are asked to give consent for the donation of organs, tissues and clinical data for the CTF project. NDRI coordinates the recovery and provision of the organs and tissues to develop the biorepository and support NF research.