Resources & Events


Check out these additional resources

We’re here to support you in any way we can. Sometimes this means providing you
information directly. Other times it means pointing you in the right direction.

Below are some additional resources, including links to our advocacy partners.

Resources for NF1 (neurofibromatosis type 1)

Children’s Tumor Foundation

Neurofibromatosis Network

Littlest Tumor Foundation


Attend an event

Meetings and events are a great way to connect with others who understand what you’re going through. You and your child will get a chance to share your experience, learn tips from others like you, and hear from experts.



Sign up for OneSource to get support throughout your Alexion treatment and other helpful resources.

“OneSource provided a list of support groups, organizations, and resources. There are so many people out there who are willing to help.”

- Sharon