Earlier this year we conducted a survey asking for your feedback on how we can best meet your needs, and ways we can serve you better. A key theme that emerged from that survey, as well as a more extensive needs assessment survey conducted in 2014, was a desire among our community for more ways to learn from and support one another.
As a chordoma survivor myself, I feel this desire too. Early on in my journey with chordoma, I benefitted greatly from the guidance and reassurance of patients who had dealt with chordoma for years before me. And in the years since starting the Foundation, I have seen just how incredibly valuable it can be to connect with others who can truly relate to this unique experience and exchange wisdom learned along the way.
However, what we’ve heard loud and clear is that something more is needed.
To help address this need, we plan to create a private, online community forum that will make it easier for you to connect, learn from and build relationships with others in the chordoma community.
The purpose of this forum, which will be accessible through the Foundation’s website, is to create a vibrant, interactive, and safe environment where chordoma community members from around the world can ask and answer questions, share personal stories, and offer support to others.
We envision a space for patients and caregivers to:
- Get answers by posting your own questions or searching through past posts
- Join specific sub-groups relevant to your interests or needs (e.g., for caregivers, newly diagnosed patients, those interested in clinical trials, etc.)
- Share your story and get support
- Engage in group and one-on-one conversations with other community members
- Access the Foundation’s educational resources as well as community-sourced materials
- Receive the latest news and updates from the Foundation
What do you want from an online community?
We want to create this together – an inclusive space that serves the needs of everyone affected by chordoma. We would appreciate 10 minutes of your time to answer a few general questions that will help guide the creation of our online community. Your input will help shape the content, organization, and resources of the community, and ensure that it best serves those who use it.
If you don’t have time to take the survey or are not interested in the online community, learning that can help us, too. If you choose not to take the survey, please click one of the links below to help keep us informed.
We look forward to creating this new resource to support everyone affected by chordoma.