If you have a story to tell, we want to hear it! We’re here to make sure the voice of the NF Community is heard. Our strength comes from real stories by real people like you.
Send us your story below!
Thank you for all your efforts to end the struggles for people with NF. Thanks to you and this administration, you have made it possible for people with this disease to hold up their heads. I am encouraged yearly by the advances made to put an end to this disease that causes so much heartache. Thanks to you and this organization, people with NF, can say without shame or hesitation, what they have and what is being done.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.