Newly Diagnosed

Now what?

As with any new diagnosis, we’re often left wondering what next?

Here are some things to consider after learning you or your loved one has NF:

  1. Get the facts. Ask your doctor for literature or visit reputable websites to educate yourself. A list of such websites can be found on the “links” page of this website.
  2. Register for the NF Registry and the Schwannomatosis Database, if applicable.
  3. Look into finding doctors in your area knowledgeable with your condition.
  4. Get support. That’s what we’re here for! Visit our support discussion forum to meet other Nova Scotians whose lives are touched by NF. Share stories, reach out, get the latest NF news! NFSNS also aspires to host periodic support meetings to put faces to the names we’ll be seeing online, please, express your interest if this is something you think would make your journey easier to manage.
  5. Get involved. We welcome volunteers at NFSNS and would be more than happy to point you in the direction of some other ways to be involved with the larger NF community. Email us at for info.