Advocates describe multi‑stakeholder platforms — Accelerate and MIB agents — that shape pediatric and osteosarcoma research

Patient‑advocate leaders and young survivors described how organized advocacy platforms are changing drug development and research for pediatric and rare cancers. Nicole Scobie outlined Accelerate’s international, multi‑stakeholder model that brings patients, clinicians, industry and regulators together to prioritize pediatric oncology research and accelerate trials. She called equal partnership and international coordination the organization’s defining features.

Anne Graham of MIB agents and NextGen member Maeve Smart described MIB’s patient programs: an annual research conference (Factor), a research grants program, an international tumor board, a Junior Advisory Board (JAB) for adolescents and young adults, and NextGen mentorship that connects survivors to research internships and consumer reviewer roles. Maeve described using those opportunities to help shape trial design and inform investigators about patient priorities.

Why it matters: advocates emphasized that including lived experience early in development improves trial designs, accrual and outcome selection — a message echoed by FDA speakers. Both groups urged advocates to use available channels (dockets, meetings) and accept opportunities to engage even when intimidating.

What’s next: the groups highlighted ongoing activities — MIB’s Factor conference (June) and continued participation in FDA workshops — and encouraged young people to seek mentorship and engagement opportunities.