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Announcing CTF Engage: A Patient Engagement Initiative from the Children’s Tumor Foundation

By September 19, 2023February 28th, 2024Awareness, Science & Research

CTF Engage is the Children Tumor Foundation’s Patient Engagement initiative, designed to prepare individuals with NF and their families to add their perspective during all phases of the research process – from the laboratory to the clinic, to the community.

Patient Representatives team up with researchers and other drug development stakeholders as advisors, consultants, and co-investigators to help these experts understand what it is like to live with all types of NF and what outcomes are important to patients.

CTF Engage is now looking to add new Patient Representatives to this program. Over the past several years, CTF has trained patients and their family members to become effective advocates in NF research. Moving forward, we are building upon this success and are looking to add new Patient Representatives to this program. We are especially interested in bringing a diverse group of perspectives to all types of NF research, including neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly called neurofibromatosis type 2.

We are looking for NF-affected adults and NF care advocates of all backgrounds. Must be 18 or older to apply. There is no experience required.

To indicate your interest in becoming a Patient Representative, please complete this form or go to to learn more.
Space in our first cohort is very limited. If you are not invited to join the pilot program, your information will be kept on file and you will notified first when the program opens again in the future.

If you have questions, please direct them to Emily Greaves,