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 Mary Rose, our Head of Operations:

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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Flóra’s Fond Farewell

Today is the last day our Executive Director, Flóra Raffai, is spending at Findacure. In this week’s blog, we asked her to reflect on her time at Findacure. What are your future plans? My immediate plans are to take a holiday in Iceland; exploring geysers, glaciers,...

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The London Marathon: My Story

In this weeks blog, Stuart Brien shares his story of running in the London Marathon for Findacure, on Sunday 23rd April.  Well, the day finally arrived and I was up early and ready to go. A hearty breakfast of porridge and banana, and I was on my way to Greenwich to...

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Top tips on presenting

In this week's blog our Executive Director, Flóra Raffai, shares her top tips on how to give a good presentation.  Presentations at events can be one of the most effective ways for small patient groups to raise awareness of their rare disease and their work. You have...

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