Neurofibromatosis Network

Join us on May 29 for our inaugural NF concert event and help support our mission to advance research, improve clinical care, expand education and awareness, and bring hope to everyone impacted by NF. Register or donate today: weblink.donorperfect.com/nfspringconcert

NF2-Related Schwannomatosis (NF2-SWN) is often referred to simply as NF2. Today marks NF2 Awareness Day, and in recognition of this important occasion, we want to share that NF2-SWN is caused by changes in the genes located on chromosome 22.

As costs continue to rise, we never want finances to be the reason someone misses out on connection & support. We’re offering $10 off adult 5K registration with code: BackTo2025 Kansas City, May 30: raceroster.com/events/2026/11… Boardman, June 13: raceroster.com/events/2026/11…

Caring for a child with NF presents unique challenges, and you don’t have to face them alone. Mom's Panel on June 10: us02web.zoom.us/webinar/regist… Dad's Panel on June 17: us02web.zoom.us/webinar/regist…

This NF Awareness Month, we’re honoring the incredible strength, resilience, and courage of individuals and families living with neurofibromatosis. 💙 Read More Here: nfnetwork.org/pages-news/sto…

Today, on May 17 — Neurofibromatosis Awareness Day — we recognize the strength, resilience, and courage of the millions impacted by NF. 💙

NF is not contagious. Contact with a person who has NF cannot transmit the condition. This NF Awareness Month, help us spread understanding, support, and hope for everyone affected by NF. #ConnectingNF #NFAwarenessMonth #Neurofibromatosis #NFStrong

Meet Claire 💙 At just 3 years old, she’s facing NF1 with incredible bravery, strength, and joy. Despite brain tumors, vision challenges, and chemotherapy, Claire continues to shine bright and inspire everyone around her. #NFAwarenessMonth #NFStrong

As National Nurses Week comes to a close, we want to extend a heartfelt thank you to the nurses who support the NF populations with compassion! #neurofibromatosis #ConnectingNF #NationalNursesWeek #ThankYouNurses #NFSupport #HealthcareHeroes

💙 Happy NF Awareness Month! 💙 All month, we'll share important facts about neurofibromatosis (NF). This NF Awareness Month, help us spread understanding, support, and hope for everyone affected by NF. #ConnectingNF #NFAwarenessMonth #Neurofibromatosis #NFStrong

On May 16, you can help support our mission and be part of the community by attending or donating to our third annual Ducky Dash in Wheaton, IL. To register or donate, please visit raceroster.com/events/2026/10…

NF Strong is more than a 5K — it’s a community. 💙 Inspired by Gus, now thriving in high school, we walk together for everyone affected by NF. Visit NFStrong.org to join a walk!

Today we are introducing you to Tim! Tim lives with NF2-SWN and was diagnosed later in life after losing his hearing from a tumor pressing on his vestibular nerve. Suddenly facing deafness and isolation, Tim turned to running as a way to reconnect.

Mark your calendar for May 30! You can be part of this meaningful effort by attending or donating to our Annual Kansas City 5K for NF. Your participation makes a difference! To register or donate, please visit raceroster.com/events/2026/11….

Throughout May, we have a series of events designed to unite the NF community and raise funds to support our mission: finding better treatments and a cure for NF. Help support our mission by attending or donating to our inaugural concert in Georgia. weblink.donorperfect.com/nfspringconcert.

This NF Awareness Month, meet Caroline, diagnosed with NF1 at 9 months. Despite challenges, she's thriving and inspires hope for everyone impacted by NF.

May is Neurofibromatosis Awareness Month—and it’s bigger, bolder, and more inspiring than ever. Across the country, communities are coming together for walks, races, concerts, and celebrations—all to support those affected by NF. Read More: nfnetwork.org/news/network-n…

Big thanks to Drs. Armstrong and Hirbe for an engaging discussion at #ASPHO2026! 📺 Missed it? Watch the replay: bit.ly/NF26-T Appreciation to @AlexionPharma, @AstraZeneca, and @SpringWorksTx for grant support, and @nfnetwork for collaboration. #CME #MedEd

Get ready for an incredible time at the NF Strong 5K Walk and Foam Party – it’s almost here! 🎉 Don’t worry, the foam will be a blast (just not overwhelming as this video)! Are you pumped to lace up those sneakers and join us for a fun-filled walk? raceroster.com/events/2026/11…