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.
1. 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 Biobank 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 Biobank 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 biobank or for more information, call 877-230-0164 or email us at firstname.lastname@example.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
- 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 private group on Facebook – a global community of survivors and family members who provide support and guidance while sharing current information with other group members. Please contact email@example.com to request admittance. Please note: While many of those in this Facebook group are involved with the Foundation as volunteers and community advisors, the Facebook group is privately run and is separate from the Foundation.