Hello,
I see you found our General Health Conditions & Rare Disorders forum.
I think that should be the best fit at this time.

If you use Neurofibromatosis & keywords about it in your post and Neurofibromatosis in your title, the search engines will be more likely to pick up on your messages and bring others here to share with you.

You can also do a forum search to see if it had been mentioned here before.
search tool-
http://neurotalk.psychcentral.com/search.php