Blog

We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.

Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!

If you would like to share your own story on our blog, please contact Taryn, our Communications Officer: taryn@findacure.org.uk

The Cambridge Rare Disease Showcase

On Thursday 24th August, we held the latest instalment of our Rare Disease Showcase – this time in our home town of Cambridge. Thanks to the generous support of our sponsor Collaborative Drug Discovery, and supporter Whiskers LLP, we hired out Baroosh for the evening,...

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Snowdon with Mummy

This week's blog is written by Shelley Simmonds, mummy to 4-year-old Fraser who has Duchenne Muscular Dystrophy. Shelley shares her story of climbing Mount Snowdon, carrying her son on her back the whole way, and raising money for the UK charity Harrison's Fund. Have...

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So far in 2017…

It’s been mega busy lately at Findacure HQ, so busy in fact that we completely missed the halfway point of 2017! However, as things begin to slow down (who am I kidding?) and the days start to get shorter (winter is coming), Mary Rose has taken some time out to...

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Setting up a patient group

Patient groups play a vital role in the rare diseases community - providing support, guidance and information to patients and their family members. But many groups don’t know where to start when it comes to establishing themselves and getting off the ground. With this...

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Hospital Beds and Board Games

This week's blog features another of our 2016 Student Voice Essay Competition submissions. Kiana Bowden, a medical student at St Andrews University, explores how the impact of a rare disease is much more widespread than its direct symptoms, drawing metaphors between...

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