Neurofibromatosis Network

Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.

[Neurofibromatosis Network @nfnetwork]

What a remarkable year! We celebrated 30 years of advocacy for NF federal funding while embracing 250 years of U.S. independence. Together, we can continue to make a difference! Wishing you all a safe and joyful Fourth of July!

[Neurofibromatosis Network @nfnetwork]

Nebraska—let’s hit it out of the park! Join the NF Central Plains crew for a FREE baseball meetup at Haymarket Park, Saturday, August 29. Tag your friends and bring your team spirit! Slide into their inbox at [email protected] to RSVP. #neurofibromatosis

[Neurofibromatosis Network @nfnetwork]

Get ready for an unforgettable night! We’re just two weeks away from our NF Strong Summer Concert, featuring an exhilarating live dueling piano performance that you won’t want to miss! 🎹✨
Get tickets at https://t.co/QnSJJE497S

[Neurofibromatosis Network @nfnetwork]

Happy International Joke Day! They say laughter is the best medicine, so today is the perfect day to get your dose.
Do you have a corny joke? Share it in the comments!

#InternationalJokeDay #LaughterIsTheBestMedicine #neurofibromatosis

[Neurofibromatosis Network @nfnetwork]

This July 4, celebrate freedom through generosity. Join the #Giving4th movement and make the NF Network your charity of choice. Your gift helps fund research, improve care, and support those affected by neurofibromatosis. https://t.co/MMzJctu4lw

[Neurofibromatosis Network @nfnetwork]

Dueling Pianos. Big Energy.
One Powerful Cause.
When: July 17th 2026
Where: Woodstock Arts Event Green, 111 Elm St., Woodstock, GA, 30188
Time: 5:30-9:30 pm

https://t.co/QnSJJE497S

#neurofibromatosis #NFnetwork #NFstrong #georgia #CharityConcert

[Neurofibromatosis Network @nfnetwork]

July 15, 2026, 11:00 AM CT
Join a discussion on NF2-SWN and Hearing!

Dr. Bradley Welling will cover hearing preservation and restoration, followed by Leah and John Manth speaking on support strategies.

https://t.co/ESs8MxCX99.

[Neurofibromatosis Network @nfnetwork]

When it comes to NF, knowledge is power! Find educational webinars and more on our YouTube channel. https://t.co/UasTUnYzCV to

Want to take it a step further and sign up with us to stay informed? Visit https://t.co/a4ztFUL081 to sign up!

[Neurofibromatosis Network @nfnetwork]

📢 Encouraging news! The House Appropriations Committee has proposed $25M for the Neurofibromatosis Research Program in its FY27 Defense spending bill. While not final, this is an important first step. Thank you to everyone who advocated for NF research! 💙 #ConnectingNF

[Neurofibromatosis Network @nfnetwork]

How are MEK inhibitors changing the management of NF1-associated plexiform neurofibromas? Hear Drs. Laura Klesse and Justin T. Jordan discuss practical treatment considerations, patient monitoring, & collaborative care strategies in this @PeerView program: https://t.co/gZ8EXDIGJB

[Neurofibromatosis Network @nfnetwork]

To all the incredible fathers out there: Whether you're living with neurofibromatosis, caring for a child with NF, or both, we want to celebrate you! In honor of Father’s Day, we’re excited to share a recent panel discussion featuring some awesome dads: https://t.co/SZd9YtPBUM

[Neurofibromatosis Network @nfnetwork]

Join us in July for SketchNF! Celebrate art, courage, and community as kids with NF share their stories. The @sketchnf_ Auction opens July 22. Preview the Rare Square exhibit from July 7. Admission free! Details: https://t.co/uOpb57XQzW #SketchNF #NFawareness

[Neurofibromatosis Network @nfnetwork]

🎹✨ Just 1 month away! NF Strong Concert July 17 at Woodstock Arts with Music & Mayhem Dueling Pianos. Music, Reel Seafood, silent auction & more supporting NF families & research. 🎟️ https://t.co/QnSJJE497S #ConnectingNF #NFStrong

[Neurofibromatosis Network @nfnetwork]

📢 Research Opportunity for Adults with NF1
We're sharing two Florida State University studies on cognition, memory, and aging in adults with NF1 (age 40+). Participants may receive $40–$260. Questions? [email protected] or [email protected] #NF1 #NFResearch

[Neurofibromatosis Network @nfnetwork]

Join our free webinar for dads raising children with NF tomorrow! Connect with fellow fathers and experts to discuss managing appointments, caring for siblings, exploring treatments, and finding balance. https://t.co/r9sX560DLq

[Neurofibromatosis Network @nfnetwork]

Raising a child with neurofibromatosis (NF) comes with challenges that can impact every part of family life—and you don’t have to navigate them alone. https://t.co/r9sX560DLq

#neurofibromatosis #NFdad

[National Organization for Rare Disorders (NORD) @RareDiseases]

Do you have questions about participating in #RareDisease clinical trials as a patient or caregiver? Join our webinar tomorrow at 2pm ET for answers.

RSVP now and submit your #ClinicalTrial questions: https://t.co/uHrsw7dWGR

Sponsored by @AlexionPharma

[Neurofibromatosis Network @nfnetwork]

Come celebrate, connect, and make a difference together! To register or donate, please visit https://t.co/QnSJJE497S.
#ConnectingNF #Neurofibromatosis #NFConcert #SupportNF #HopeForNF #Fundraising #Awareness #WoodstockGA

[Neurofibromatosis Network @nfnetwork]

It is not too late to register for this weekend! The weather is forecasted to bring sunny skies and temperatures in the low 80s on Saturday, making it a perfect day for a walk. Registration is available here: https://t.co/kOZMtkbWoX

#neurofibromatosis #NFStrong #boardmanoh

[Neurofibromatosis Network @nfnetwork]

As summer heats up, let's reflect on NF Awareness Month! Throughout May, the NF community united to raise awareness, inspire connection, and strengthen our commitment to finding better treatments and a cure.

Read more: https://t.co/Lk44gcjCpx