Neurofibromatosis Type 1 with Cutaneous Neurofibromas
Forum

Current topics:

• - What is the most frustrating or difficult aspect of living with a rare disease?
  Hello everyone,  How are you today? As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, cha

Current topics:

• - How has living with neurofibromatosis affected your daily life?
  Hello everyone, We have created a new dedicated group to neurofibromatosis. For the first discussion here in the "Living with neurofibromatosis," please introduce yourself and talk about how neur

Current topics:

• - What are the most troubling symptoms and complications?
  Hi everyone, Neurofibromatosis is a condition that can cause tumors to form in the brain, spinal cord, and nerves, which can cause varying symptoms and complications. What are the most troubling sy

Current topics:

• - Have you had surgery to remove problematic growths and/or tumors? Share your experience
  Hi everyone, while there is no cure at this time for neurofibromatosis, one of the more common treatments is an operation to remove problematic growths or tumors. Such an operation, and the therapy a