Are You a Swan? — Order of the SWNs Foundation

Do you have more than one
schwannoma?

You may have schwannomatosis — a real diagnosis that most doctors have never heard of.

The average patient waits

16.7 years

for a correct diagnosis · Merker et al. 2022, MGH & Johns Hopkins

You don't have to wait that long.

Signs that may point to schwannomatosis (SWN)

Two or more schwannomas anywhere on the body
Chronic nerve pain with no clear cause
Numbness, weakness, or tingling in your hands, feet, or limbs
Tumors that return after removal
Diagnosed with fibromyalgia, CRPS, or anxiety —
when the pain kept getting worse and no one had an answer
A family history of schwannomas, NF2, or unexplained nerve tumors

Flight of the Swan

Find answers. Find your people.

orderoftheswns.com

No membership required to get help

Find an NF Clinic · Join The Order · Get Care Navigation

Play the game. Flight of the Swan teaches players what SWN looks like — and every player becomes a finder. Visit orderoftheswns.com/play — free to play.