Speaking Out, Speaking With, and Speaking For Our NF Community

At the beginning of February, advocates participating in the NF Network Advocacy Program met with hundreds of congressional offices to share your stories and educate on the importance of continued federal funding for NF research. We thank you for your continued support as we fight for better treatments and a cure to end neurofibromatosis.

Camp New Friends Returns This Summer


After experiencing the fun of summer camp virtually, Camp New Friends returns to bring “a fun, supportive environment for kids with neurofibromatosis.” Designed to reduce the social stigma and feelings of isolation associated with NF, campers will enjoy summer fun and social connections.
Raise NF Awareness on Rare Disease Day


Rare Disease Day is February 28th! It is estimated that there are over 300 million people living with rare diseases around the globe. Among those 300 million, over 130,000 Americans alone are living with neurofibromatosis. Join us in raising NF awareness and generating change in the rare disease community.
Reelin' for NF Research on Kelly's Wings


Kelly DeHart was a vibrant and loving young lady whose smile lit up a room. In her memory, Kim and Will Carpenter are hosting a fishing tournament to honor their daughter and support the thousands of others living with neurofibromatosis.
Meet the Advocate: Heather Marsden, PhD


The goal of the NF Network Advocacy Program is to educate and advocate for and with the NF community. As the program grows, we are ecstatic to welcome new advocates who are ready to share their voice in Washington D.C. Meet one of our newest advocates, Heather – mom to daughter Chloe who has NF1.
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?