News and events

03/03/26

Celebrating 5 Years of Chordoma Chat and Cheers

This year, we are proudly celebrating the 5th anniversary of Chordoma Chat & Cheers, our monthly virtual support group held on the last Thursday of every month and open to members of our private Facebook group.


When Sylvie Leslie, Chordoma UK Trustee, created this group it was the very first virtual chordoma support group of its kind anywhere in the world. It was designed for anyone living with a chordoma and for anyone supporting someone with a chordoma. At the time, Sylvie wasn't sure whether it was something people truly needed.


Five years later, the answer is clear.


Month after month, people show up. The steady presence of warriors (patients) and supporters (carers) has proven just how important it is to have a space that belongs to us — a space where no one has to explain what chordoma is, and where everyone immediately understands.


What began as a small idea here in the UK has since inspired similar groups in the USA, France, Holland and beyond. That is something we can all feel incredibly proud of.


A Space Just for Us


Each month, our informal patients’ and carers’ forum become a place where experiences and mutual support meet. There is no taboo, no judgement and no pressure to speak.


Everyone is free to ask questions openly, share their lived experience, talk about doubts or worries, or simply listen. Every participant leaves enriched by the exchange — whether through advice received, reassurance given, or simply the comfort of knowing they are not alone.


It is a space filled with kindness, empathy and understanding.


Celebrating Together in May!


To mark this special 5-year milestone, our May session will be a celebratory virtual “Open House.” For this anniversary gathering only, we will share the Zoom link directly in our private Facebook group — meaning there will be no need to register in advance. We hope this makes it even easier for new members to join, pop in, and experience the warmth of Chat & Cheers for themselves.


Sylvie is deeply proud of what this group has become — and deeply grateful to every single person who has joined, shared, listened and supported others over the years.


As we celebrate five incredible years of connection, courage and community, it feels only fitting that we step into this next chapter with something special.


In honour of our 5th anniversary, we are absolutely thrilled to unveil our brand-new Chordoma Chat & Cheers logo.


This new look represents growth, resilience and unity — everything this community stands for. It reflects how far we have come together, from a small idea sparked here in the UK to an international source of comfort and strength.


While our look may be evolving, the heart of Chat & Cheers remains exactly the same: a safe, welcoming space for patients and carers, built on empathy, honesty and shared understanding. Here’s to five years of connection, courage and community — and to many more conversations ahead.


Together, we are stronger. 

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