Share Your Hope for NF for NF Awareness Month

Our worlds have been impacted in ways we never thought possible, yet through it all, we have still seen good news and hope, including the first approved treatment in history for neurofibromatosis. This May for NF Awareness Month, we are turning the focus back to YOU and reflecting on a future without NF.

From Graduate to Advocate

Rachel Sakofs, a Speech-Language Pathologist and alumna of the MGH Institute of Health Professions, uses her IHP education to help her son and raise awareness of his rare disorder.

FDA Approves First Treatment for Neurofibromatosis

The U.S. FDA has approved Koselugo (selumetinib) to treat plexiform neurofibromas in pediatric NF patients 2 years of age and older, making it the first approved treatment for NF.

Taking the NF Hope Concert Online

This country and the world have been impacted in ways we never imagined, especially those affected by rare diseases like NF. Join us for our inaugural NF Hope Concert Live Stream and bring a taste of the concerts home to you.

The NF Network Coffee Chat Must Go On

Neither virus, nor tornadoes, nor other unforeseen circumstances could stop the NF Network from hosting our Mississippi Coffee Chat. Even under these conditions, we worked alongside DeAnna Atkins to turn this event into a great opportunity to build community.

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?