In June of 2020, we launched the Chordoma Survivorship Initiative, with the goal of empowering you to:

1. access in-depth information, resources, and guidance specifically tailored to address the quality of life issues that most frequently affect individuals who have been affected by chordoma and
2. get the best care and support needed to address these issues and live the fullest lives possible.

Read more about the initiative »

To learn more about the quality of life challenges that you, our community members, face following a diagnosis of chordoma, we created a survey so you could easily share this information with us. We’re now about halfway to our goal of 1,000 responses, and we want to share the results we have so far with you. We will update this page regularly so be sure to check back!

Jump to section: Skull base quality of life | Mobile spine quality of life | Sacral quality of life | Accessing care for quality of life challenges | Co-survivor challenges and accessing care | Experiences with survivorship care planning | How CF can help

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General information about survey respondents

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Quality of life challenges reported by skull base patients and survivors

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Quality of life challenges reported by mobile spine patients and survivors

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Quality of life challenges reported by sacral patients and survivors

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Ability of patients and survivors to access care for quality of life challenges

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Quality of life challenges reported by co-survivors (spouses/partners, parents, family members, friends)

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Survivor and co-survivor experiences with survivorship care planning

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How the Chordoma Foundation can help

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