The Children’s Tumor Foundation (CTF) was recently featured in Clinical Research News in an article titled “Rethinking the Role of Nonprofits in the R&D Ecosystem,” which highlights how CTF is challenging the status quo and charting a new path for nonprofits in research and drug development.
Published in conjunction with CTF CEO Annette Bakker’s keynote panel at the 2025 World Orphan Drug Congress (WODC), this article explores how nonprofits like CTF are stepping beyond grantmaking to become active builders of the R&D ecosystem. Dr. Bakker describes CTF’s evolution into a strategic force that drives progress – by lowering barriers to entry, forging cross-sector partnerships, and creating the infrastructure needed to accelerate treatments.
At the heart of this shift is CTF’s integrated research platform: a patient-centric “sandbox” that includes a global patient registry, a robust biobank, open-access data tools, and a collaborative preclinical testing network. Through initiatives like Synodos, the Foundation is reimagining collaboration through real-time data sharing and unified scientific goals – all grounded in the needs of people living with NF.
The model is already delivering results: it has attracted new industry partners to the NF space, sparked promising trials, and is a blueprint for other rare disease communities to fast-track innovation.
Read the full article here: Clinical Research News – Rethinking the Role of Nonprofits in the R&D Ecosystem
