Sustaining Hope NF Forum The Children’s Tumor Foundation’s NF Forum took place virtually in 2020, in a series of five online webinars about specific types of NF and manifestions. This national patient education symposium allows those living with NF and their families to connect, support, and learn from each other. Families and patients learn together while attending seminars on relevant topics pertaining to neurofibromatosis and have the opportunity to meet NF researchers and medical professionals in attendance at the NF Conference.
Patient Engagement CTF’s Patient Representative Training Program is the Foundation’s Patient Engagement initiative, designed to prepare individuals with NF and their families to participate as advocates in NF research. Through online and in-person learning, the program’s goal is to show patients how to add their perspective during all phases of the research process. Patient Advocates are trained to work with stakeholders such as researchers, research institutions, the pharmaceutical industry, the U.S. Food and Drug Administration, and patient advocacy organizations.
20 |
ANNUAL REPORT 2020
Neurofibromatosis Clinic Network (NFCN) The Neurofibromatosis Clinic Network was established by the Children’s Tumor Foundation to standardize and raise the level of neurofibromatosis clinical care nationally, and to integrate research into clinical care practices. By the end of 2020, the NF Clinic Network had grown to 65 clinics that serve approximately 15,000 patients. Clinics may apply to join the NFCN and are evaluated based on many factors, including expertise in NF care, access to specialists, number of patients seen, and commitment to educating healthcare providers and patients about the diagnosis of and treatments for NF.
