Join the Order of the SWNs Foundation

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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. We're looking for people who want to be part of that.

Three ways to get involved

Round Table Member Foundation · Community

Join as a full community member of the Order of the SWNs Foundation. Access the Knowledge Bank, participate in Round Table discussions, stay connected to research updates, events, and advocacy work.

The Round Table is where patients, caregivers, and supporters come together. No clinical expertise required — your presence and perspective are the contribution.

Mission Volunteer Choose a Quest

Choose a specific Quest and contribute your skills directly to the work. Quests are the active missions of the Order — each one targets a concrete gap in schwannomatosis care.

Active Quests:

Find Lost SWNs — Patient Outreach SWN Fund — Development & Grants Standards — EHR / Epic BPA Standards — NF Clinic Accountability Research Advocacy — Rosie Presence — NF Conference Voice — NF Registry

The Bevy Flexible Volunteers

Our flexible volunteer pool. No permanent commitment to a single Mission — you go where you're needed, when you're needed.

Good for people with variable availability who still want to show up when a Quest needs hands. When a Mission calls for help, the Bevy gets the ask first.

Join at

theorderoftheswns.org

/join · Select your role on the form

Choose Round Table Member, a specific Mission to volunteer for, or the Bevy — or all three. No cost to join.

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