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 British Ambassador, Kate Mason, provided input for this section, drawing from her own experience as a chordoma patient. Gerald Fitz-Gibbon and Sylvie Leslie (Chordoma UK) also reviewed and provided input.
Please inform us if you are aware of any other local resources that may be helpful to others.
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 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.
UK taxpayers, regardless of residency or nationality, can make tax-deductible donations through the UK Fund For Charities. You can donate to UKFC online (type “The Chordoma Foundation” under UKFC International Program).
When you donate to the Chordoma Foundation through the UK Fund for Charities, you will receive a donation receipt from them, which you, in turn, can use for tax purposes.
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.
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.
