Chordoma Foundation


Featured Champion

European liaison expands Foundation’s reach overseas

Hans KeulenWhen 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 has 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 explains.

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 are currently organizing the second European Community and Physician/Researcher Conferences for June 2014, and working hard to expand the Foundation’s network of patients, physicians and scientists across Europe. He is teaming with physicians in the European Society for Medical Oncology to develop standards and guidelines for the treatment of chordoma, has been instrumental in establishing the new European Chordoma Registry, and hopes to develop a European biobank soon.

One of the biggest challenges in Europe, Hans notes, is 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 is conversant in several languages, and he often provides support and shares his experiences with fellow members of the chordoma community. That this self-employed businessman and married father of three has accomplished so much in just a few short years is amazing – but Hans knows this model isn’t sustainable. One of his immediate goals is 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 is also a priority.

While Hans is currently focused increasing the Chordoma Foundation’s visibility and impact in Europe, he envisions a time when the Foundation will 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.”

 

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