Why did we conduct this survey?
In June of 2020, we launched the Chordoma Survivorship Initiative, with the goals of empowering you to:
- 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
- Get the best care and support needed to address these issues and live the fullest lives possible
To learn more about the quality of life challenges that you, our community members, face following a diagnosis of chordoma, we conducted a survey so you could easily share this information with us. We received nearly 900 responses! Learn more about what we heard from you in the graphs below.
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Information on all survey respondents
Side effects and quality of life challenges of skull base patients and survivors
Side effects and quality of life challenges of mobile spine patients and survivors
Side effects and quality of life challenges of sacral patients and survivors
Ability to access care for quality of life challenges
Co-survivor challenges and accessing care
Experiences with survivorship care planning