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 German Ambassadors, Irene Badura, and Carolina Herzfeld, provided input for this section, drawing from their own experiences.
Please inform us if you are aware of any other local resources that may be helpful to others.
This bi-monthly online meeting is for anyone with chordoma and/or their loved ones. Please note that the language of communication in this group is German. The group is moderated by our Ambassador Irene.
The group meets every third Tuesday of every other month at 19:30 CEST. Our 2024 meetings are scheduled for: January 16, March 19, May 21, July 16, September 17, and November 19.
About the moderator: Anja, from Bavaria, Germany, was diagnosed with a sacral chordoma in June of 2023. With little information about this rare disease, she took it upon herself to search for answers. Her search led her to the Chordoma Foundation, which quickly became an important resource for her. After attending a few online Zoom-Cafés, Anja helped initiate the idea of a WhatsApp support group. She now co-leads the group with Irene and the Chordoma Foundation, offering support and guidance to others on the same journey.
Who can join: This WhatsApp group is for anyone with chordoma and/or their loved ones. The language of the group is German. Please email us for the link to join the group.
We have established a mechanism that allows residents of Germany to make a donation to the Chordoma Foundation that is tax-deductible in Germany through Maecenata Stiftung. When you donate to Chordoma Foundation through the Maecenata Stiftung you will receive a receipt from them that you can use for your income taxes in Germany.
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 German 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.
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 our Ambassador, the Expert Answers Video Series is available with subtitles in German.
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.
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.
