It started with a small group of US families
The Chordoma Foundation was founded in 2007 in the United States by a small group of families. At that time, chordoma research was almost nonexistent and connections with other patients were rare, leaving many feeling isolated. Today, thanks to the contributions of countless people affected by chordoma all over the world, the research and treatment landscape has completely changed. The chordoma research field is now vibrant, with a steadfast commitment to finding better treatments and a deeper understanding of the disease. We’ve become a strong international community, working together for better outcomes and experiences for everyone affected by chordoma.
Bringing the Chordoma Foundation to Europe
Hans Keulen was a remarkable force in the chordoma community whose contributions have left an enduring impact. Diagnosed with skull base chordoma in 2009, Hans found that there were few resources or support networks available in Europe. Determined to change this, he turned to the Chordoma Foundation in the United States, where he found the information and community he desperately needed. Hans became deeply involved, eventually joining our Board of Directors and serving as our European Liaison.
Hans was instrumental in uniting the worldwide physician community to develop the first consensus guidelines for the diagnosis and treatment of chordoma, which were published in The Lancet Oncology in 2015. These guidelines have become the foundation for our Expert Recommendations booklet that is still used worldwide today, helping countless patients understand their treatment options.
In 2011, Hans worked closely with the Chordoma Foundation to establish its European branch, Chordoma Foundation Europe, which operates as a separate Dutch nonprofit entity but remains seamlessly connected to the US-based Foundation. His tireless efforts to expand the Foundation’s reach in Europe included organizing the first Chordoma Community and Physicians Conferences in Amsterdam and building a network of patients, doctors, and researchers across the continent.
Even as he battled his own recurrence, Hans never wavered in his commitment to the chordoma community. His vision for a global network to support research and patient care continues to guide our work. Sadly, Hans passed away on October 29, 2015, after a six-year battle with chordoma, but his legacy lives on. He inspired all who knew him with his optimism, cheer, and passion for improving patient care, and his work set in motion a movement that continues to thrive today.
Hans Keulen July 28, 1957 – October 29, 2015
Our European partners
We work closely with the following European organizations to improve outcomes for chordoma patients and their families:
