Chordoma Foundation Peer Connect Program
Support from someone who has been there can make all the difference. Peer Connect is a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experiences with chordoma are similar. Trained Peer Guides are available to support chordoma patients who are newly diagnosed, patients in active treatment, survivors, caregivers, family members, or friends.
Get matched with a Peer Guide
If you’re interested in talking to someone who has been through a similar chordoma journey, Peer Connect can help. Once registered, we will match you with a trained Peer Guide who has had similar experiences and who has had to face many of the same challenges that you now face. All Guides are trained to provide a listening ear, serve as a sounding board, and if requested, suggest helpful information and resources.* The connection between you and your Guide may involve only a few phone calls, or it may develop into a longer relationship — whatever is most helpful for you.
Benefits of the Peer Connect program
- Connect with someone who has been through their own chordoma journey
- Get support as you learn about treatment options and find care
- Explore resources to address quality of life challenges
- Be heard and supported
*Guides do not serve as health professionals and can not provide medical advice. By participating in the Chordoma Foundation Peer Connect program, you acknowledge that you understand the program is for support purposes only and does not provide medical, legal, or psychological advice, diagnosis, or treatment. The Peer Connect program may provide helpful health-related information, but it is not intended to substitute for professional advice, diagnosis, or treatment.
Become a Peer Guide: Provide chordoma support
Has your life been touched by chordoma? Do you remember benefiting from talking with someone who had been through their own chordoma journey? Do you understand the questions and fears someone might experience because of your own experiences with chordoma?
If you answered yes to any of these questions, then you may be uniquely qualified to give back to the chordoma community by becoming a Peer Guide. Our Peer Guide training will provide you with active listening skills and resources for providing support. Learn more about the Peer Guide experience.
Criteria for becoming a Peer Guide
- Be at least one year past your or the patient’s initial treatment
- Have strong interpersonal skills
- Be emotionally ready to participate in a supportive relationship
- Be able to listen with empathy without promoting a particular agenda, doctor, or type of treatment
- Be willing to commit to an active match for at least six months
- Be willing to complete online training within 30 days of acceptance into the program
- Be willing to learn about Chordoma Foundation initiatives relevant to patient care
Connect with peers on Facebook
Newly diagnosed chordoma patients, survivors, and family members can connect with others in a closed/private support and survivors group on Facebook that is hosted by members of the chordoma community. This close-knit community exists to help answer questions, share personal experiences, offer guidance, and serve as encouragement throughout your journey with chordoma. There are over 2,400 members in 83 countries in this private/closed forum and when you join you’ll be asked to answer a few simple questions that only group moderators can see. Because this is a private/closed group, posts within the group are visible only to group members.
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.