Why are we conducting this survey?
The Chordoma Survivorship Initiative launched this year is a response to what we have heard from you, our community, about the ongoing quality of life impacts of chordoma. We’ve recognized that as more people are living with, through, and beyond chordoma, there are not only large areas of commonality with regard to quality of life issues experienced by chordoma survivors and co-survivors, but there are also gaps in the information and resources available to help you find the right care for these issues.
Our goal, therefore, is to empower you to live the fullest lives possible by providing you with in-depth information, resources, and support to help fill those gaps so you can access the care and assistance you need. In order to best meet your needs, we want to learn more from you about the issues you’re facing, the resources that have helped (or been lacking), and how the Foundation can assist in better meeting your needs.
What will be done with the results of this survey?
As we move forward with our Chordoma Survivorship Initiative plans, results of the survey will inform the areas we focus on when creating new educational materials, resources, and opportunities for connection and support. In the meantime, the survey results will be available to the whole community on our website, so we can all learn from each other.
You will remain anonymous unless you choose to share your name with us at the end of the survey. And even if you do choose to share your name, identifying information will never be published or shared in any way in connection with the survey.
The survey should take about 10 minutes to complete. If you have any problems, please email firstname.lastname@example.org or click "Contact the Chordoma Foundation" at the bottom of any survey page.
Thank you for your time!