Navigating life with chordoma is an experience unlike any other. It is a journey filled with many questions, with uncertainty, and with highs and lows that only others who have walked in the same shoes can truly understand.
As a result, many of us affected by chordoma seek out other patients and families for support, reassurance, and answers to our questions. When I was diagnosed, for example, having other patients to turn to for guidance was quite literally a life saver. At that time, we connected through a support group on MSN. More recently, many within the community have connected through private Facebook groups, as well as in-person community conferences, and the CF Peer Connect Program.
Those venues are all very valuable. However, at the Foundation, we’ve heard consistently over the years that many in our community want something more. For some, the desire is for a way to connect with others with similar interests or experiences. For others, it’s a way to participate in only the conversations that are relevant to them, and filter out the others that aren’t. For many, it’s a way to easily find and learn from valuable information that has already been exchanged within the community.
From talking with many fellow patients and family members, one thing is clear: we have a tremendous amount of collective wisdom, and a great deal to offer one another. If that wisdom can be captured and better organized, and more valuable connections can be facilitated between us, then we all stand to benefit.
To make that possible, in January, the Chordoma Foundation will launch a new online community designed specifically for chordoma patients and family members. Called Chordoma Connections, this will be a private space where individuals affected by chordoma can come together to exchange information, share experiences, and support one another. It is built on an intuitive and user-friendly platform customized by our Patient Services team to address the specific needs and desires we’ve heard from listening to the chordoma community.
Our hope is that Chordoma Connections will make it easy to find and engage with others around the world who share similar interests, experiences, and concerns. Moreover, within Chordoma Connections, the valuable knowledge chordoma patients and caregivers have to share with one another will never be lost. Content will be archived and searchable and will be an important source of information from and for the chordoma community for years to come.
Specifically, in Chordoma Connections you will be able to:
- Get your questions answered, either by posing a new question or searching past discussion threads
- Join sub-groups relevant to who or where you are (e.g., caregivers only, patients only, chordoma community in Canada)
- Share your experiences, and hear about how others have dealt with similar situations
- Give or get emotional support
- Access educational resources
- Receive the latest news and updates from the Foundation
Regardless, of what you want to get out of the online community, there will be a place for you in it. We hope you will give it a try when it launches in January and we look forward to seeing you there. Stay tuned for more information early in the New Year!