News and events

23/09/25

Rare, But Never Forgotten: Our Chordoma Community

Tuesday September 30th is Rare Cancer Day, a day dedicated to raising awareness for rare cancers. To have a chordoma diagnosis is to know the meaning of the word ‘rare’ intimately. It can feel like being set adrift on an unknown sea, surrounded by medical uncertainty and the isolating feeling that very few in the world truly understand the path you are walking.

That feeling of isolation is one of the hardest parts of the journey. It’s in the explaining, and re-explaining, of your condition. It’s in the search for specialised knowledge and the longing to speak with someone who just gets it.

This is why Rare Cancer Day is so important. It’s a day where we, as a collective voice, can stand up and say, “We are here. We may be rare, but we must not be forgotten.” It is a day to shine a light on the critical need for more research, better treatments, and ultimately, a cure.

And this is why our community, Chordoma UK, exists.

We are your anchor in that uncertain sea. We are the hand reaching out to say, “You are not alone.” We are a network of patients, families, carers, and friends, bound together by a shared experience and a common hope. Here, you find understanding without explanation, support without judgement, and the powerful comfort of shared strength.

But a community cannot thrive on support alone. To keep our lifeline going, to fund the vital research that gives us hope, and to continue providing the resources that make a tangible difference, we need help. The research into new treatments and potential cures is pioneering, but it is also expensive. Every clinical trial, every lab study, every step forward is fueled by funding.

By supporting Chordoma UK, you are doing more than making a donation. You are investing in hope. You are helping to ensure that no one faces this rare diagnosis without a community behind them. You are contributing to the science that one day will change the outcome of this disease for everyone.

On this Rare Cancer Day, let’s remind the world of our strength. Let’s lean on each other, share our stories, and continue to build this incredible circle of support.

You are rare. You are important. You are not forgotten.

Together, we can keep going until a cure is found.

Donate to Chordoma UK: https://chordoma-uk.org/donate

Join our Facebook Support group: https://www.facebook.com/groups/chordomauk/

Share your story: https://chordoma-uk.org/stories

 

With heartfelt thanks and solidarity,

The Chordoma UK Community

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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.

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