The NF Network Needs YOUR VOICE on Capitol Hill!

Each year in February, advocates participating in the NF Network Advocacy Program meet with hundreds of offices to educate Congress on the importance of continued federal funding for NF research. As we prepare for our annual visits, we need YOUR help to speak out, speak with, and speak for the NF community by sharing your personal NF story!

SpringWorks Therapeutics Announces Full Enrollment of Phase 2b ReNeu Trial Evaluating Mirdametinib in Patients with NF1-PNs


SpringWorks Therapeutics has completed enrollment for their phase 2b ReNeu trial evaluating mirdametinib, an investigational MEK inhibitor, in NF1 patients with plexiform neurofibromas.
A new resource for managing hypertension in children with NF1


A collaborative of specialists from around the globe has come together with a vision to help patients with pediatric Renovascular Hypertension (pRVH) get the best care possible. This diverse and comprehensive team of researchers, clinicians, patients and families will improve the quality of life and treatment outcomes for pRVH patients.
Thank You for Making a Difference


As we enter a new year, we reflect on your unwavering compassion and generosity. From the bottoms of our hearts, we thank you for your continued support of the NF Network and the thousands living with neurofibromatosis. Our work wouldn't be possible without you! See how we're making a difference together.
Magical Mila


Mila was diagnosed with NF1 at 2 months old. At a one-year follow-up of a previously detected heart murmur, Mila was also diagnosed with Mid-Aortic Syndrome and Renovascular Stenosis - very rare manifestations of NF that caused Mila to have extremely high blood pressure. In her memory, her parents share Mila's story and raise awareness for NF1 and high blood pressure in infants and toddlers.
Upcoming Events
The mission of the NF Network is "to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, and providing outreach through education and awareness while offering hope and support to those who affected by NF."

Will you join with us?