All chordoma patients should have access to the information and support that will help them make the most informed decisions about their care. The resources on this page can provide you with one-on-one assistance, help you locate chordoma medical experts, and give you more information on chordoma so you can get the best care possible.
Chordoma Foundation Patient Navigators provide personalized information and support to anyone affected by chordoma, anywhere in the world, at any stage of their journey. Your Patient Navigator will use their extensive knowledge of chordoma to help answer your questions, provide information about treatment guidelines, help you find qualified doctors, talk with you about side effects, and connect you with others in the chordoma community who have been through a similar journey.
No matter where you are in your journey with chordoma, you should be treated by doctors who have extensive experience with the disease. Our Doctor Directory includes doctors around the world who have experience treating chordoma who can help you carefully consider your options.
This resource can help you and your doctor if you are considering drug therapies, either through a clinical trial, off-label prescription, or compassionate use.
Chordoma is a complex disease to treat. Patients often wonder what types of questions they should ask their doctors to help them make the most informed decisions about their care. We developed questions to ask about treatment with input from chordoma patients, caregivers, and members of our Community Advisory Board on questions they found important to ask their doctors.
Medical language can be hard to understand when discussing diagnosis and treatment. Our glossary provides a list of important medical terms that are explained in simple language for easier comprehension.
Get answers to the questions that patients and caregivers often have about chordoma, its treatment, finding support and resources, and getting involved.
Everyone needs help on the journey with chordoma. Here you will find publications, tools, and resources for financial assistance, housing, general cancer support, and more.
Whether you're newly diagnosed, facing a recurrence, or dealing with advanced disease, our step-by-step guide will walk you through the steps of learning about chordoma and your treatment options, finding care, and getting support.
“I was informed that the tumor tissue I donated had been used to develop a new chordoma cell line, one of the first-ever created and that my cell line was enabling a slew of research discoveries that would not have been possible otherwise.” – Susan Garbett, sacral chordoma survivor
The first steps of research in any type of cancer are done in a lab. Some of the basic materials scientists need for their research can only be created from human tumor tissue. Lack of chordoma tumor tissue poses a major challenge to creating these materials and advancing chordoma research. One critical way patients can help overcome this challenge is by donating tumor tissue to the Chordoma Foundation Biobank through our Tumor Donation Program.