Several patient advocacy groups like Children’s Tumor Foundation, Littlest Tumor Foundation, Neurofibromatosis Network, and Children’s Hospital of Philadelphia are focused on creating awareness and disseminating knowledge to enhance the understanding of NF1 among patients and families affected by NF1 alongside driving the research for preventing therapies for NF1 (114–117). Here, NF1 is linked to neurofibromatosis type 1.