Chordoma Foundation

For Newly Diagnosed Patients

If you have recently been diagnosed with chordoma we want you to know that you are not alone. The Chordoma Foundation and many chordoma survivors are here to help you to be well. We believe passionately that every chordoma patient deserves to benefit from our collective knowledge and wisdom about chordoma to be able to make informed decisions that will lead to the best possible outcomes. This page provides a starting point for finding the information and resources you need to successfully navigate your new diagnosis.

er-teaser-square-2751. Learn about chordoma

Knowledge is power when it comes to dealing with chordoma. These pages contain the basic information you need to know about the disease.

2. Plan your treatment

The treatment plan that you choose, especially for your first treatment, can have a major impact on your outcome. It is therefore very important to evaluate your options carefully. These pages will help you make informed decisions about your course of treatment.

3. Consider donating part of your tumor for research

Tumor tissue is critical for research needed to develop improved treatments for chordoma. The Chordoma Foundation Tumor Donation Program enables chordoma patients to donate excess tumor tissue removed during surgery – tissue that would otherwise go to waste – to be used for research. It’s free, won’t interfere with your treatment and will greatly help to advance the search for a cure.

Please contact us as soon as surgery is scheduled so that our team can make arrangements to properly save and collect your tumor tissue. If you have already had surgery we can also attempt to retrieve tissue that might have been saved at the hospital where you had surgery.

To participate in the Tumor Donation Program or for more information, call (877) 230-0164 or email us at tumordonation@chordoma.org.

4. Get connected with the Chordoma Foundation

Register with the Foundation to receive the latest information about new treatments and clinical trials, opportunities to participate in research and events, and updates about our progress in advancing the search for a cure.

5. Get support

If you or someone you care about is dealing with chordoma, our Patient Navigation Service can answer your questions, explain treatment options, help you find qualified doctors, and more. Request help from our Patient Navigation team to get personalized assistance.

Connecting with others who have been through their own journey with chordoma can provide you with support, perspective, and encouragement when dealing with a chordoma diagnosis. Some ways to find support include:

  • Peer Connect: Our peer connect program matches you with trained peer mentors from the chordoma community to help support you throughout your journey with chordoma.
  • Chordoma Survivors Support Group on Facebook: Newly diagnosed patients, chordoma survivors, and family members can connect with others in the chordoma community through a private Facebook group. This close-knit community exists to help answer questions, share personal experiences, and serve as encouragement throughout your journey with chordoma. Email approval from the group moderators is required to protect the privacy of the more than 1,500 members. Please send a brief email stating your relationship to chordoma to chordoma.group@gmail.com, and you will receive a reply from a group administrator. *While many members of this  Facebook group are involved with the Foundation as volunteers and community advisors, the group is privately run and separate from the Foundation.