Neurofibromatosis Type 1 with Cutaneous Neurofibromas
Forum

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:

• - 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

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:

• - 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
• - How were you diagnosed with a rare disease?
  Hello everyone, How are you doing? I thought I'd create this discussion to talk about being diagnosed with a rare disease! What were the first symptoms you experienced? How were you diagnosed? @A

Current topics:

• - COVID-19 masks: Are you going to continue wearing a mask after you've had the vaccine?
  Hello everyone, I hope you're doing well. As the discussions continue on the end of the COVID-19 lockdown and social distancing measures, you may have some questions about the use of protective fa
• - COVID-19: How do you feel today?
  Hello everyone, I've opened this discussion so we can share our state of mind during this period of isolation! Let's come here everyday to share how we're feeling! What is the best way to stay pos
• - COVID-19 vaccine: What do you think?
  Hello everyone, How are you today? The pharmaceutical groups Pfizer (USA) and BioNTech (Germany), as well as Moderna (USA), announced last month that their vaccine candidates are around 94 and 95%