From the Network

Inaugural Awardee of the NF Network Research Program, Project Dream

Inaugural Awardee of the NF Network Research Program, Project Dream

In The News

Decoding NF: Strategies for Living with Chronic Pain

Join host Shane Smith as he interviews Dr. Frank Buono and they discuss Dr. Buono's pioneering research on pain management, including pain management strategies, importance of mindfulness and a multidisciplinary approach to treatment.


Seeking participants for NF1 study of how cutaneous neurofibromas form

The Neurofibromatosis Therapeutic Acceleration Program (NTAP) at Johns Hopkins University seeks participants study that will use a specialized 3D photography system to take whole-body pictures once a year for up to five years to track the progression of cutaneous neurofibromas (cNF) over time.

Event Highlight

Stay #NFStrong This Summer!

#NFStrong events take place in cities and communities across the country. Learn more about our first Ducky Dash in May, our ongoing #NFStrong 5K's, and how you can get involved this summer and fall!

People Spotlight

Henry Ford Health works to raise neurofibromatosis awareness

The Gilbert Family Foundation and Henry Ford Health are working together to learn more about neurofibromatosis to help patients like Tracy Irby. Neuro-oncologist Dr. Tobias Walbert believes the work that will take place at the Nick Gilbert Neurofibromatosis Research Institute will open new doors for patients living with NF.

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