Chordoma Foundation

Take our Chordoma Survivorship and Quality of Life Survey

Chordoma Survivorship Survey


The survey is now closed. View preliminary results from the survey.



Last month, we launched the Chordoma Survivorship Initiative, aimed at helping individuals affected by chordoma manage the physical, emotional, spiritual, and practical challenges commonly experienced following diagnosis and treatment.

Created in response to what we’ve heard from our community about the need for support with the various follow-up care and quality of life issues that impact both survivors and co-survivors (including caregivers, family, and loved ones), the initiative will offer personalized tools and resources that can empower you to live the fullest life possible after your own or a loved one’s diagnosis of chordoma.

As the initiative expands, your input will be critical to ensuring it meets your needs and the needs of our community as a whole. In order to learn more from you, we’ve developed a survey tailored to our community, focusing on chordoma survivorship and quality of life.

This brief, online survey will take less than 10 minutes to complete, can be submitted anonymously, and should be taken by anyone who has been affected by chordoma. Whether you are a patient or survivor, a caregiver or family member, or you have lost someone you love to chordoma — we want to hear from you. The survey covers topics such as:

  • Your experiences with survivorship care
  • The physical, emotional, and social quality of life concerns you have faced or are facing now
  • Whether care, assistance, and support is/has been available to meet your needs
  • How COVID-19 is affecting care
  • How the Foundation can help

Your journey with chordoma doesn’t end when treatment ends, and neither does our support. Please let us know how we can continue to help.

The survey is now closed. View preliminary results from the survey.

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