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 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].

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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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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