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 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 Libbie, our Projects and Communications Manager, on [email protected].

Weaker muscles, stronger family

This week's blog shares the story of Kerry Shippey whose son George who was diagnosed with Duchenne Muscular Dystrophy less than a year ago.  It provides an eye-opening insight into life pre- and post-diagnosis of a rare condition. George was our first born son. He...

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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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