Community & Resources
The NF Community
The Order of the SWNs Foundation does not stand alone. Decades of advocacy, science, and patient organizing already exist. Here is where to find it.
Online Communities
Where patients, caregivers, and allies gather between appointments.
Research news, NF Conference announcements, and community updates from the primary NF/SWN nonprofit.
Visit ↗UK patient community with dedicated schwannomatosis Facebook groups. Find their community link via their website — active peer support across all NF and SWN subtypes.
Visit ↗Patient stories, research updates, and advocacy from CTF.
Visit ↗Moderated patient community hosted by NF Network. Includes schwannomatosis discussion threads alongside NF1 and NF2.
Visit ↗Moderated patient discussion thread for schwannomatosis at Mayo Clinic Connect.
Visit ↗US — National
Founded 1978. The leading global NF nonprofit — research funding, patient resources, the annual NF Conference, and the CTF CCAB (Clinical Care Advisory Board). Hosts the NF Conference where advocates, researchers, and clinicians meet each year.
Founded 1988 (formerly NF, Inc.). The leading national NF advocacy organization — federal funding advocacy, patient community on Inspire, and the umbrella network for US regional NF affiliates. Over $400 million in federal NF research funding attributed to their advocacy.
US — Regional
Serves CT, MA, ME, NH, NJ, NY, PA, VT, RI. Has made an intentional organizational focus on SWN with an active virtual series and planned in-person SWN event in 2028. Patient support, events, and NF advocacy across the Northeast.
Active regional organization with schwannomatosis-specific resources. NF Midwest staff participate in the REiNS International Collaboration.
Full directory of NF Network member organizations including NF California, NF Michigan, NF North Central (MN/WI/ND/SD), Neurofibromatosis Network – Arizona (AZ/NM/UT/WY), and others. If your state is not listed above, start here.
International
The leading voice for NF patients in the United Kingdom. Provides information, regional patient days, a national NF helpline, and an online community. Has dedicated schwannomatosis content and Facebook groups.
Research & Clinical
Response Evaluation in Neurofibromatosis and Schwannomatosis. An international initiative of researchers and clinicians dedicated to improving clinical trials for NF and SWN. Establishes outcome measures used in schwannomatosis trials.
National rare disease advocacy and support. Patient assistance programs, rare disease database, and policy advocacy.
Moderated patient community at Mayo Clinic with an active schwannomatosis discussion thread. Good for patient-to-patient support from people at or near a major academic center.
All active and recruiting clinical trials for schwannomatosis. Includes the STARFISH trial (NCT05684692, PI Dr. Scott Plotkin, MGH) and others.
Genetic Testing: UAB Medical Genomics Laboratory
The University of Alabama at Birmingham Medical Genomics Laboratory runs the highest-volume NF genetic testing program in the world. Dr. Ludwine Messiaen and her colleagues discovered the LZTR1 gene — one of the two primary schwannomatosis genes. Their schwannomatosis NGS panel covers NF2, SMARCB1, and LZTR1.
Insurance coverage:UAB testing is sometimes covered by commercial insurance when a clinician orders it with proper documentation — two or more pathology-confirmed schwannomas plus a clinical indication. Prior authorization is almost always required and is frequently denied on the first attempt. It is worth appealing. Medicare and Medicaid coverage varies by state. The prices above are UAB’s self-pay rates.
If you need help affording genetic testing, reach out. We will try to help — and when the FIND Fund has capacity, testing costs are exactly the kind of barrier we exist to remove.
Know of an organization, regional group, or resource that should be on this list?
Tell us → info@theorderoftheswns.org