News and events

02/06/26

The Fabric of Our Community: Sharing the Journey, Together

Living with or supporting someone with a specific, complex diagnosis like chordoma is a journey marked by things that only our community truly understands. It is a path filled with a unique blend of everyday realities—the deep frustrations of navigating ongoing appointments, the profound resilience required to adapt to a "new normal," and the pure joy found in the small wins that others might take for granted.

Whether it is reclaiming a bit of independence, hitting a personal milestone, or simply getting through a challenging week, these moments are significant. But so are the days when the frustration feels heavy.

The most beautiful thing about our community is that you never have to carry any of it alone.

Our community is built on the understanding that it is okay to not be okay, and it is equally okay to celebrate every bit of progress. We are a network of patients, family members, and caregivers who act as a soft place to land. When the road gets bumpy, this is the community you can always lean on—for a listening ear, a shared piece of advice, or simply the comfort of knowing someone else truly "gets it."

We see this enduring spirit of mutual support in action every single month. Our virtual gatherings offer a regular space to connect, share experiences, and exchange practical tips on navigating life with chordoma. This regular connection is a powerful reminder of just how deeply rooted our support has become. It proves that through every adaptation and every hurdle, we continue to show up for one another.

If you are facing a frustrating week, navigating a new change, or celebrating a quiet victory, remember that your community is right here waiting for you. You don’t have to explain your journey here; we already understand.

Here are a few ways to connect with others who are walking a similar path:

  • Join Our Private Facebook Group: This is a safe, moderated space for daily discussion, support, and sharing resources. It's a great place to ask questions and find understanding from those who "get it." Find us at: https://www.facebook.com/groups/chordomauk/
  • Join Our Monthly Virtual Gatherings: Come along to our "Chordoma Chat & Cheers" sessions to chat, laugh, and exchange experiences with others in a warm, completely informal setting.
  • Connect with Sylvie: If you have questions about our support groups, want the link for the next virtual chat, or need further assistance, please feel free to email sylvie@chordoma-uk.org.

We are stronger together, we are more resilient together, and through it all—TOGETHER WE CAN.

Back to news & events

Archive

Want to make a donation?

You are the reason we can keep providing our vital supprt and funding. Individual donations and gifts may be made directly to Chordoma UK and enhanced through GIFT AID. Your fundraising can benefit from Chordoma UK`s charitable status enabling donations to be made through the Gift Aid scheme directly to the Chordoma UK bank account.

Donate now
Contact

Join our Mailing List

Please sign up to receive our newsletter and follow our ongoing updates and events.

Donation

How your donation is spent

There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

Find out more
Contact

Get in touch

If you have any questions about Chordoma UK, or would like to talk to someone about cancer, send us an email and we'll get back to you as soon as we can.

Contact us
Community

Community

We all support each other

To share experiences, ask questions or vent your emotions and find others who understand.

Join us here

Useful links