Schwannomatosis?

Having been under the illusion for many years that I have NF2 or Neurofibromatosis type 2 I have now been re-diagnosed with Schwannomatosis first example in 1973 in reality NF3 this now explains a LOT of my symptoms, it seems to be more rare 1 - 40,000 than NF2, which means less medical research? Having to learn these strange sounding and spelt terms would there be any sort of societies which deal with Schwannomatosis or would I have to get in touch with the various Neurofibromatosis societies?

Adlon

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