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Hans Keulen


We are deeply saddened by the loss of our Board member and European Liaison, Hans Keulen, who passed away this week after a six-year battle with chordoma.

A native of the Netherlands, Hans was the driving force behind the Foundation’s work in Europe. For the past four years, he worked tirelessly helping dozens of chordoma patients find appropriate care and organizing the European medical community to collaborate on research and improve the care provided to chordoma patients. Perhaps most notably, Hans instigated the development of the first consensus guidelines for the treatment of chordoma, which were published earlier this year – an important step towards improving and standardizing the care that patients receive. Thanks to his efforts, Hans became one of the most well-known and respected voices in the European patient advocacy community, and, in recent years, he played a major role in bringing the needs of rare cancer patients to the attention of the medical community and policy makers in Europe.

All of us at the Foundation are in awe of what he was able to accomplish even while being in poor health. He is truly the embodiment of perseverance and was an extraordinarily capable champion on behalf of our cause. Though he will be sorely missed, his efforts have set in motion a movement among the European physicians community that will continue. And he has inspired the Foundation to fully embrace his important efforts to serve the chordoma community and improve the care that is delivered to chordoma patients in Europe and beyond.

Above all, we are grateful to Hans for inspiring us with his constant drive, his optimism, his cheer, and his infectious smile. We must, and we will, continue to persevere in his honor.

Tell us your Uncommon Story

Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.

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