Volunteer Ambassadors help chordoma patients and families outside the U.S. connect with local resources — and each other. They also help distribute educational materials to medical centers and identify chordoma-experienced doctors in their countries.
Diagnosis and treatment experiences can differ from country to country. Our Dutch Ambassador, Caroline Kooy, provided input for this section, drawing from her own experience as a caregiver.
Please inform us if you are aware of any other local resources that may be helpful to others.
These are bi-monthly online meetings for anyone with chordoma and/or their loved ones. Please note that the language of communication in this group is Dutch. The group is moderated by our Ambassador Wally van Laarhoven.
The group meets every third Wednesday evening (19:30) and third Friday morning (10:30) of every other month. Our 2024 meetings are scheduled for: January 17 and 19, March 15 and 20, May 15 and 17, July 17 and 19, September 18 and 20, and November 20 and 22.
What should I do? If you or someone you know has chordoma, you’ve probably found yourself asking this question. It’s an important question to ask because, when it comes to treating chordoma, what you do — or don’t do — can have a major impact on your life. We developed the following chordoma educational materials in Dutch to help you make informed medical decisions and get the best care possible for yourself or your loved one.
In this booklet, you will find information about how chordoma is diagnosed and tests to get before treatment.
This booklet is intended to answer questions about what to do if your tumor returns and how to get the best care possible.
The Chordoma Foundation is an 'Algemeen Nut Beogende Instelling' (ANBI) in the Netherlands. This classification allows residents of the Netherlands to donate directly, and deduct their donations from their Dutch income or corporate taxes (RSIN 8255 13 601).
If you wish to contribute, you can donate by credit card (or via PayPal) and you will receive a confirmation from us that you can use for your tax return.
Making sense of chordoma and how to deal with it can be a real challenge. Every day we speak with chordoma patients and their loved ones looking for answers to important questions. From finding the right care team to understanding treatment options to getting emotional support, there are a number of practical challenges that most everyone affected by chordoma will face at one time or another.
You can get straight answers to those questions directly from leading chordoma experts and our community members through our Expert Answers Video Series. Whether chordoma is new to you or something you have been dealing with for a while, we hope this video series will provide greater clarity about this complex disease and help you make more informed decisions.
Thanks to the support of our volunteers, the Expert Answers Video Series is available with subtitles in Dutch.
Everyone needs help on their journey with chordoma. The Chordoma Foundation offers services and resources to support you at any stage of your journey.
We can help answer your questions, provide information about treatment guidelines, help you find qualified doctors, and connect you with others in the chordoma community.
Experts from Leiden University Medical Center candidly discuss treatment options and challenges in chordoma care. This series is the result of a collaboration between Leiden University Medical Center, Caroline Kooy (our ambassador for the Netherlands), and Patient Platform Sarcomas.
We know chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected: whether by donating, hosting a fundraiser, or participating in research. There are lots of opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes.
