NF Knowledge Series: Diagnosed with Schwannomatosis

Описание: This webinar is part of the Children's Tumor Foundation NF Knowledge Series and was recorded live on February 20, 2025. Dr. Carlos Romo discussed recent changes in our understanding of Schwannomatosis and how that impacts diagnosis and management for patients.

Dr. Romo is the Assistant Professor of Neurology, Oncology and Medicine, and the Director of Clinical Research, Neurofibromatosis Therapeutic Acceleration Program at Johns Hopkins University School of Medicine.


The Children’s Tumor Foundation (CTF) is the drug discovery engine for NF. Everything we do is to bring treatments to patients as we work toward a cure. By connecting patients, doctors, scientists, and pharma, we drive treatments, advance care, and deliver results for millions affected by neurofibromatosis or schwannomatosis, collectively referred to as NF. Our patient-first collaborative approach accelerates drug development and brings life-changing therapies to patients faster, driven by our mission to end NF.

What is NF?
NF refers to a group of genetic conditions that cause tumors to grow on nerves throughout the body. NF affects 1 in 2,000 births and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all races, ethnic groups, and genders equally. The types of NF include neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly called neurofibromatosis type 2 (NF2).

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