Community Calendar
NF and SWN Events
Presentations, fundraisers, webinars, and community events from across the schwannomatosis world — curated for SWN patients and families. All NF types included.
Upcoming Events
NF Walk Houston
Annual NF Walk fundraiser supporting research and awareness for all types of neurofibromatosis and schwannomatosis.
#NFStrong 5K — Memphis
Celebrating 15 years — stroll, roll, walk, or run to support the NF Network's mission of research and patient support for all types of neurofibromatosis and schwannomatosis.
2026 European Neurofibromatosis Conference
International conference in Vienna bringing together researchers, clinicians, patient advocates, and industry on NF1, NF2-related schwannomatosis, and schwannomatosis. Focus on patient involvement in research and care, molecular advances, and emerging precision medicine approaches. Schwannomatosis is an explicit program focus alongside NF1.
2026 Children's Tumor Foundation National Gala
The Children's Tumor Foundation's annual National Gala celebrating the NF community and raising funds for research and patient support across all types of neurofibromatosis and schwannomatosis.
CTF Virtual Case Conference — NF1 Complex Case
Complex NF1 case discussion. Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.
CTF 2027 NF Summit — Chicago
The NF Summit is CTF's annual patient and family conference — distinct from the clinical NF Conference running the same week. Brings together patients, families, advocates, researchers, and clinicians for community, education, and connection. All NF types including all forms of schwannomatosis.
CTF 2027 Annual NF Conference — Chicago
The Children's Tumor Foundation's annual NF Conference brings together patients, families, researchers, and clinicians from across the neurofibromatosis and schwannomatosis community. All NF types represented — NF1, NF2-SWN, and all forms of schwannomatosis. The Order of the SWNs Foundation will have a table — come find us.
Know of an Event?
If your organization is hosting a presentation, fundraiser, webinar, or community event for the NF and schwannomatosis community, we want to list it here. All subtypes welcome — NF1, NF2-related, and every form of schwannomatosis.
Events are sourced from partner organization websites. Always verify registration details at the source before signing up.
Past Events
RARE Advocates Webinar — FDA New Framework Initiative
With James Valentine (Moderator) — RARE Foundation Board, Hyman Phelps & McNamara · Annie Kennedy — RARE Foundation · Amy Rick — Rare Disease Innovation Hub, FDA · Ryan Fischer — Foundation for Angelman Syndrome Therapeutics
Panel discussion on the FDA's new framework initiative, featuring voices from patient advocacy, the FDA's Rare Disease Innovation Hub, and rare disease foundations. Open to all.
2026 NF and Schwannomatosis Patients & Caregivers Symposium
With Rebecca Brown, MD, PhD
UAB and Children's of Alabama co-host this free, in-person symposium for NF and schwannomatosis patients and caregivers. Covers new scientific developments, clinical trials, drug treatments, and surgical treatments for both NF1 and schwannomatosis variants. Complimentary food and live music. No cost to attend.
2026 RARE Artist Public Voting
244 entries from the rare disease community — 20 finalists are now up for public vote. Vote for up to 10 pieces of artwork created by rare disease patients, caregivers, and advocates using art to share their stories and raise awareness. Voting closes October 23.
NF Walk Greensboro
Annual NF Walk fundraiser supporting research and awareness for all types of neurofibromatosis and schwannomatosis.
CTF Virtual Case Conference — Women's Health
Case-based discussion on women's health considerations in neurofibromatosis and schwannomatosis. Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.
NF Walk Atlanta
Annual NF Walk fundraiser supporting research and awareness for all types of neurofibromatosis and schwannomatosis.
Beyond Sound 2026: A Day for NF2-SWN Patients & Care-Partners
An empowering, in-person full-day NF2 workshop covering communication strategies and resources for living with hearing loss, updates in NF2-related schwannomatosis, and community connection for patients and care-partners.
NF Walk Dallas
Annual NF Walk fundraiser supporting research and awareness for all types of neurofibromatosis and schwannomatosis.
NF Walk MN
Annual NF Walk fundraiser supporting research and awareness for all types of neurofibromatosis and schwannomatosis.
Coast to the Cure 2026 — 15th Annual Cycling Fundraiser
Now in its 15th year, Coast to the Cure is NF Northeast's annual cycling event — riders raise funds for patients and families affected by neurofibromatosis and related disorders including schwannomatosis. Donate, ride, or volunteer.
CTF Virtual Case Conference — NF2-SWN and Vestibular Rehab
Case-based discussion on NF2-related schwannomatosis and vestibular rehabilitation. Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.
The STARFISH Clinical Trial for Pain Relief in Non-NF2 Related Schwannomatosis
With Scott Plotkin, MD · Vanessa Merker, PhD
An educational presentation on the STARFISH clinical trial, including its goals and the latest research focused on pain relief for individuals with SMARCB1, LZTR1, SWN-NEC, and SWN-NOS schwannomatosis. Presented by two of the leading researchers at the MGH Neurofibromatosis Program.
CTF Virtual Case Conference — NF1 Neurofibromas and ANNUBP
Case-based discussion on NF1-associated neurofibromas and atypical neurofibromatous neoplasms of uncertain biologic potential (ANNUBP). Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.
CTF Virtual Case Conference — Non-NF2-SWN
Case-based discussion on non-NF2 schwannomatosis — SMARCB1, LZTR1, SWN-NEC, and SWN-NOS subtypes. Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.
CTF Virtual Case Conference — NF1 Orthopedics
Case-based discussion on NF1-related orthopedic complications. Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.
CTF Virtual Case Conference — Topic TBD
Topic to be determined. Part of the 2026 CTF Virtual Case Conference series for medical professionals. Note: held on the 4th Thursday in March.
This event is intended for medical professionals. Not intended for patients or caregivers.
CTF Virtual Case Conference — Treatment for NF1 Low-Grade Glioma
Case-based discussion on treatment approaches for NF1-associated low-grade glioma. Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.
CTF Virtual Case Conference — NF1 Complex Case / Plexiform Neurofibroma
Complex NF1 case discussion focused on plexiform neurofibroma. Part of the 2026 CTF Virtual Case Conference series for medical professionals.
This event is intended for medical professionals. Not intended for patients or caregivers.