You found us. Now join us.
The Order of the SWNs Foundation is building what schwannomatosis patients have never had — a trained community that finds the lost ones, holds clinics accountable, and pushes the research forward. Share this with anyone in the SWN community who wants to be part of that.
Share the flyer
Free to print, post, and forward. Share it to SWN support groups on Facebook, Inspire, or X. Post it in NF communities. Tag a patient, caregiver, or advocate who's been looking for a place to land.
Three ways to be part of the Order
Round Table Member — Join as a community member. Access the Knowledge Bank, attend Round Table discussions, stay connected to research and advocacy. The foundation of everything we do.
Mission Volunteer — Choose a Quest and contribute your skills directly. EHR advocacy. Clinic accountability. Patient outreach. Research support. Conference presence.
The Bevy — Our flexible volunteer pool. No permanent commitment to one Mission — you go where you're needed, when you're needed. When a Quest needs extra hands, the Bevy gets the call.
On Inspire? Post the flyer link to the Schwannomatosis community at inspire.com — copy the URL above and share it directly.
Go to the Join form →What We Are Building
Schwannomatosis is rare, often misdiagnosed, and underserved — the average patient waits 16.7 years for a correct diagnosis. The Order exists to change that through organized, targeted work.
- Find the lost ones — get the awareness flyer in front of every undiagnosed patient
- Hold clinics accountable — document the gap between what NF clinics claim and what the record shows
- Build the EHR flag — develop a Best Practice Advisory that fires when a patient has 2+ schwannomas on record
- Fund the research — advocate for shelved science that deserves to move forward
- Be in the room — attend schwannomatosis and rare disease conferences organized and heard
- Grow the registry — get every SWN patient enrolled in the NF Registry