- Schwannomatosis
A consortium of medical institutions is collecting limited information on schwannomatosis patients. This includes their symptoms, their management and medication, and whether receiving ongoing treatment, no treatment, or deceased. They hope that the information collected will help improve how patients are cared for, with the goal of understanding more about the symptoms of schwannomatosis and making treatments as effective as possible.
To read more about this project visit the website or watch the interview with the former SID coordinator, Amanda Bergner.