✦ Soft Launch — We are a brand-new Foundation (incorporated September 2026). Spotted an error or have a question? Email us. ✦
The Order of the SWNs Foundation — You are not alone. The Invisible Flock of the Forgotten. Support. Information. Community. Hope.

Not sure if this is you?

Start with Symptoms

2 or more schwannoma tumors. Pain that won’t stop. Years without answers. Learn what the pattern looks like.

Symptoms & Diagnosis →

Already diagnosed?

Find the Right Clinic

Not every NF clinic sees your subtype. We’re building the most complete SWN clinic directory in the US — sorted by real documented expertise.

SWN Clinic Directory →

Come to the table

The Round Table

Patients, researchers, and clinicians — one room, no hierarchy. This is where we work together.

Round Table →

Ready to be part of this?

Join the Order

Patients. Caregivers. Clinicians. Researchers. Everyone who believes 16.7 years is too long is welcome here.

Join The Order →

Latest Research News

October 12, 2026Preclinical

Cell therapy takes aim at rare nerve tumors — first preclinical breakthrough for NF1/SWN

A new study in Cancer Immunology, Immunotherapy provides the first proof of concept for tumor-infiltrating lymphocyte (TIL) therapy across the full spectrum of NF1 and schwannomatosis-related nerve sheath tumors. Researchers found moderate-to-high T cell infiltration in 98.3% of schwannomas and 84% of neurofibromas — meeting the biological prerequisite for TIL intervention. Their optimized OM-400 protocol achieved 100% expansion success across NF1, SWN, and MPNST patient samples and significantly suppressed tumor growth in a live MPNST mouse model.

Read the paper summary →See the full pipeline →

Do you have 2 or more schwannoma tumors?
You may have schwannomatosis.

Schwannomatosis is a rare genetic condition in which multiple schwannomas develop throughout the body. Schwannomas are benign tumors that grow from the cells forming the protective sheath around peripheral nerves. As they grow, they press on nerves and cause chronic, often severe pain—burning, stabbing, electrical shock sensations, or relentless deep ache.

In most forms of schwannomatosis, bilateral hearing-nerve tumors are not present—which is why it is frequently missed by clinicians who recognize only NF2. Known genetic subtypes involve mutations in SMARCB1, LZTR1, or the NF2 gene, but many patients test negative for all currently known mutations. A negative genetic test does not rule out the diagnosis.

See the diagnostic criteria →Smith et al., Lancet Oncol, 2022 · 2022 WHO Classification of Tumours
16.7 yrsmedian symptom-to-diagnosis
9.8 yrsfrom first seeking care to diagnosis
36%receive at least one wrong diagnosis first

These are not estimates. They are measured.

Merker et al., Am J Med Genet A, 2022
2022
NF2SMARCB1LZTR1

Merker VL et al.

“Understanding barriers to diagnosis in a rare, genetic disease: Delays and errors in diagnosing schwannomatosis”

American Journal of Medical Genetics Part A 2022;188(8):2414–2425. doi: 10.1002/ajmg.a.62860

Read paper ↗PubMed ↗
Abstract & key data

Merker VL, Bergner AL, Bhatt S, Cooper A, Coy S, Giancola S, Heberton M, Kim MJ, Leary S, Marcario J, Panageas KS, Park C, Peacock ZS, Plotkin SR, Romo T, Stemmer-Rachamimov A, Torres-Reveron A, Warr MR, Yun J, Jordan JT

Abstract — summary (full text paywalled)

A retrospective analysis of 97 patients with confirmed or probable schwannomatosis seen at two U.S. tertiary care NF clinics. The study documented the specific delays, diagnostic errors, and missed opportunities between first symptom onset and confirmed schwannomatosis diagnosis. Barriers identified included intermittent or non-specific initial symptoms, younger age at symptom onset, psychiatric misattribution of pain, pathology errors on individual tumor specimens, and failure to trigger genetics referrals after the first schwannoma. The study recommended interventions in clinician education, genetic testing availability, expert pathology review, and automatic referral triggers. Note: full abstract paywalled. Summary compiled from published preprint (medRxiv) and published paper findings. Free preprint available at medRxiv link above.

16.7Median years — first symptom to diagnosis
7.5 – 26.0 years95% CI
9.8Median years — first medical consultation to diagnosis
3.5 – 16.2 years95% CI (consult to diagnosis)
36%Patients misdiagnosed at least once
18.6%Misdiagnosis: underlying genetic condition
16.5%Misdiagnosis: pain etiology
11.3%Misdiagnosis: tumor imaging or pathology
19.6%Cases with clear missed diagnostic opportunities
97 patients, 2 U.S. tertiary NF clinicsStudy population

Commonly reported symptoms

  • Burning & stabbing pain
  • Electrical shock sensations
  • Pain from light touch
  • Numbness & tingling
  • Extreme fatigue
  • Post-exertional crash
  • Muscle jerks & twitches
  • Limb weakness & heaviness
  • Tinnitus & hearing loss
  • Balance problems
  • Headache & facial pain
  • Neck, back & rib pain
  • Bladder & bowel symptoms
  • Sleep disrupted by pain

The Count

Unknown SWNs are out there.

We are finding them one at a time. These numbers start at zero — and will not stay there.

—SWNs in The Order

Patients who have joined — diagnosed or undiagnosed, still searching for a name.

—Advocates at the Table

Researchers, clinicians, genetic counselors, family members, donors, and advocates who have joined The Order to help close the gap.

0FIND Fund Grants

Patients supported with travel, testing, or care access costs through the FIND Fund.

?SWNs to Find

Estimated schwannomatosis patients worldwide. Most do not have a diagnosis. Most do not know The Order exists. Yet.

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Our Missions

Four missions. Every quest The Order runs advances one of them.

Mission
FIND
Find the Lost SWNs

Three active quests: the flyer in chronic pain waiting rooms, the Flight of the SWN game that makes the diagnostic journey shareable, and direct outreach in the communities where the next undiagnosed SWN is already searching.

Mission
FUEL
FUEL with Coin

The financial engine behind every mission. Targeted patient access grants, the coin behind the conference table and physician kits, research advocacy, and social media fundraising challenges that grow the donor base and the flock simultaneously.

Mission
FORGE
Forge the Standards

Evaluate whether providers who claim schwannomatosis expertise actually deliver it — especially for the lesser-known subtypes. Build the EHR alert, get the physician media kit in front of clinicians before the chart is opened, and change the training programs that produce the next generation of misses.

Mission
FLOCK
Flock & Raise a Squawk

Get the SWN community into every room where decisions about our care are being made — schwannomatosis and rare disease conferences, the Round Table, and the NF Registry where our subtype data must be counted.

See all missions & quests →
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The Round Table — an ornate carved table with a swan and lavender at its center, surrounded by empty chairs
Open now

The Round Table

No hierarchy. One table.

Schwannomatosis and rare disease conferences bring the right people into the same room. The Round Table keeps that conversation going the rest of the time.

It runs both ways. Patients get questions answered by people who know the science. Researchers get to ask the patients they’ve spent years trying to find — because until now, there was rarely a SWN in the room.

PatientsResearchersCliniciansAdvocatesGenetic CounselorsRadiologistsGrant WritersEducatorsREiNS Coordinators

Pull up a chair. The table is open.

See who’s at the table today →Join The Order →
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Patients Powering Progress

Register with the NF Registry

The NF Registry is CTF’s patient enrollment platform — more than 11,000 participants enrolled worldwide across NF1, NF2-related, and schwannomatosis. No physician referral required. Patients register themselves, and their anonymized data goes directly to the researchers studying NF and SWN.

If you have any form of schwannomatosis or NF and haven’t enrolled yet, please do. You don’t have to be a member of The Order. You just have to be counted.

Register with the NF Registry →
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Latest from The Order

◇Research NewsAutomatic SWN research feedPubMed + Google Alerts →◈Voices & AdvocatesSWN patient advocatesSee all voices →✦Patient StoriesLauren Papadopoulos Greenin Newsweek →
Research →Voices →Stories →
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Education & Awareness

Flight of the SWN

Every obstacle in Flight of the SWN is drawn from documented clinical failures — the dismissals, the wrong diagnoses, the psychiatry referrals, the decade of waiting. Play the journey. Then hand your doctor the map.

▶ click to watch full screen
Play Now →