When Hans Keulen was first diagnosed with skull base chordoma in 2009, he searched for organizations near his home in the Netherlands or in nearby countries that could provide information and support to help him through this unfamiliar journey. After his search turned up empty, he decided to bring much-needed resources to the European chordoma community to help his fellow patients and advance care and research for this uncommon disease.
Hans had heard about the U.S.-based Chordoma Foundation (CF), and in March 2011 he attended the third Chordoma Community Conference in Bethesda, Maryland.
“I said to [Executive Director] Josh Sommer, ‘Let’s see what I can do for the Chordoma Foundation in Europe,’” Hans recalls. Josh readily agreed, and the two worked together to establish a European branch of the Chordoma Foundation. (For legal reasons, CF Europe is incorporated as a separate nonprofit entity in the Netherlands, but it operates as a branch of the U.S.-based Foundation.)
As CF’s European Liason, Hans championed the Foundation’s work and expanded its European efforts in a variety of ways, including coordinating the first Chordoma Community and Physicians Conferences in Amsterdam in 2012.
“There are 28 countries in the European Union alone, with many different languages and medical and legal systems, so it’s really helpful to have someone based here to advocate for the Foundation,” the Dutchman explained.
In 2013, a tumor recurrence forced Hans to curtail his efforts for several months, but after recovering from surgery and getting adjuvant treatment with targeted therapy, he came back more determined than ever to make a difference. He and a small team of fellow volunteers organized the second European Community and Physician/Researcher Conferences for June 2014, and worked hard to expand the Foundation’s network of patients, physicians, and scientists across Europe. He teamed up with physicians in the European Society for Medical Oncology to develop standards and guidelines for the treatment of chordoma, was instrumental in establishing the new European Chordoma Registry, and had hoped to develop a European biobank.
One of the biggest challenges in Europe, Hans noted, was language. “In the northern European countries over 90 percent of the population has at least conversational knowledge of English, but in other European countries that number drops below 30 percent, so it’s important for us to translate the Chordoma Foundation’s website into several languages besides English. Our short-term goal is to have portions of the website and Facebook pages translated into French, German, Italian, and Spanish, to provide country-specific information, and to create peer networks so people can connect and find support in their local language.”
Hans himself was conversant in several languages, and he often provided support and shared his experiences with fellow members of the chordoma community. That this self-employed businessman and married father of three accomplished so much in just a few short years was amazing — but Hans knew this model wasn’t sustainable. One of his goals was to expand the European board and volunteer network to get more people actively involved in making this organization a success. Raising funds to sustain and expand these efforts was also a priority.
While Hans was focused on increasing the Chordoma Foundation’s visibility and impact in Europe, he envisioned a time when the Foundation would reach everywhere. “The global patient community for chordoma is so small, I think it’s important that we have one worldwide Chordoma Foundation with branches in Europe and other regions, so we can all work together to support each other and accelerate the search for a cure.”
Note: We are deeply saddened by the loss of our Board member and European Liaison, Hans Keulen, who passed away in October 2015 after a six-year battle with chordoma.