In this new article, Natalia tells the inspiring story of Marloes and Marco van Esterik from the Netherlands, whose determination turned uncertainty into action.

After Marloes’ diagnosis with a borderline phyllodes tumor, the couple discovered how little was known about this rare disease. Together, they founded the Dutch Phyllodes Group, now part of the Patient Platform Sarcomen, connecting patients, experts, and researchers to build knowledge and support.

Their work — “Only together. From nothing to treatment protocol and financing research” — was presented at the SPAGN Annual Conference 2025 in Washington, D.C., and recently recognized nationally for its pioneering impact.

Their journey is a testament to the power of collaboration and compassion in rare disease advocacy.