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 Blayne, our Marketing and Engagement Manager: [email protected]

Navigating NICE and drug evaluations

The number of treatments (orphan drugs) being developed for rare diseases is on the rise. In the USA, FDA orphan designations have steadily increased year on year since 2000 (EvaluatePharma – Orphan Drug Report 2014). While this is great news, these orphan drugs come...

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Celebrating the Peer Mentoring Programme

[row][two-third] At Findacure, we believe patient groups are vital partners in addressing the challenges posed by rare diseases; they offer crucial support to individual patients and represent the patient voice in research. As a result, one of our main aims as a...

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2015: Thank You

As the year draws to a close, we are looking back at all the people who have helped make 2015 such a fantastic year. While there are too many to thank individually in this blog post, we’d like to highlight some of the biggest contributions made in each month of the...

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Santa Claus is running to town!

[row][two-third] You may have visited Victoria Park before, but you’ve never seen it quite like this. On Sunday 6th December, around 4000 Santas descended upon the quiet London park to unite in one mission: completing a 5km or 10km run in aid of various charities....

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[row][two-third] Drug repurposing is something we spend a lot of time thinking about at Findacure, and something that we will be spending more and more time talking about in the coming months. But what exactly is it, and why should rare disease patients care? In...

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Happy 3rd Birthday Findacure!

[row][two-third] Tomorrow marks Findacure’s three year anniversary! We’ve come a long way since we were registered as a charity by Dr Nick Sireau and Dr Anthony Hall on the 7th November 2012. Here are some of our highlights from the past year... 14th November 2014 –...

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Running rings around the Royal Parks

[row][two-third] The morning of Sunday 11th October saw over 16,000 runners descend upon London’s Hyde Park, ready and raring to start the Royal Parks Half Marathon 2015. The 13 mile (or 21 km) route, which featured Wellington Arch, Buckingham Palace, Downing Street...

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