Elevating the Patient Voice: PBTF at the Patients as Partners Conference

At the Pediatric Brain Tumor Foundation, we know that meaningful change doesn’t happen in isolation — it happens through connection, collaboration, and making sure the right voices are in the room.

Last week, our Senior Director of Research, Dr. Misha Mehta, proudly represented PBTF at the Patients as Partners® in Clinical Research conference — the first conference dedicated to raising the patient voice in R&D to drive better clinical outcomes for all. Guided by pharma R&D leaders, the FDA, patient advocates, and engagement professionals, it’s exactly the kind of forum where our mission comes to life.

Roundtable Spotlight

Misha co-hosted a vital roundtable on Building Strategic Pharma–Advocacy Partnerships, along with Christa Kerkorian, VP, Patient Advocacy for Day One Biopharmaceuticals, sharing practical strategies for driving real impact through collaboration between patient advocacy organizations and the pharmaceutical industry. The conversation was honest, actionable, and deeply aligned with the work we do every day on behalf of families facing a childhood brain tumor diagnosis.

A standout moment came during the #AskThePatient segment — an opportunity for industry partners to connect directly with patients and caregivers who have participated in clinical trials, gaining firsthand insight into their experiences, challenges, and perspectives. For us, this underscored a critical truth: it’s not enough to simply share stories. True partnership means patient voices actively shape the decisions that matter most — from research design to treatment development.

Dedicated wholly to addressing this rare but devastating disease, PBTF is guided by the experiences of patients, survivors, their parents, and siblings at every step of the cancer journey. That commitment extends beyond our direct programs — it means showing up at tables like this one, ensuring that the families we serve have a seat where it counts.

By collaborating and elevating the patient voice, we can improve care, advance research, and ensure every child diagnosed with a brain tumor has the chance to thrive. It is through these powerful partnerships that we give families hope — and move closer to the future we are fighting for.