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Reflecting on Year One: CTF’s Patient Advocates

By December 19, 2018January 17th, 2024Patient Engagement

By Traceann Rose

At the beginning of the year, the Children’s Tumor Foundation launched a new Patient Engagement program, creating an opportunity for individuals with NF and their families to participate as advocates in NF research. The inaugural class of Patient Advocates were trained to work with researchers, research institutions, the pharmaceutical industry, the FDA, and patient advocacy organizations. Twenty people completed the training and received a Certificate of Completion.



Extensive training encouraged critical thinking and prepared advocates to play an active role as partners and collaborators across CTF programs and the research we sponsor.



Throughout the year they joined conference calls with medical review panels to discuss abstracts submitted for funding; they submitted feedback about executing a survey through the NF Registry and whether it was an ethical use; they also assisted planning the NF Forum as co-chairs by providing their input on topics, sessions, and managing the patient poster activities.

In addition, patient representatives were asked to review NF Registry and Biobank usage request and review Drug Discovery Initiative Registered Report applications and next year’s Contract Research Awards.

“The opportunity to communicate patient needs directly to doctors, researchers, and the Children’s Tumor Foundation helps our family feel even more involved in the giant fight to find a cure,” said Shannon McNall, certified patient advocate and mom to a young boy living with NF.

If you are interested in joining a future training and becoming a patient advocate, please visit for more information.