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: [email protected]

Saluting our Silverstone supporters

[row][two-third] It was a dense, foggy morning when the Findacure team rolled up to the infamous Silverstone circuit. Shivering as they gathered their belongings from the car, they dwelled on the ordeal about to face them: 13 miles, or 21 kilometres, of running on a...

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The Patient Group Handbook

[row][two-third] We are delighted to announce that The Patient Group Handbook, edited by our founders, has been published! The book consists of 25 practical chapters about research and drug development in the rare diseases field, including: How to set up and manage a...

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Check out our 2015 Impact Report

2015 was a fantastic year for Findacure. While continuing to achieve high standards in our existing projects, such as our patient training workshops, we also launched our peer-mentoring scheme, Cross Your Own Oceans project, and online portal. We hired another member...

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Another Ocean To Cross

[row][two-third] In 2015, we ran our first Cross Your Own Oceans; a project which aims to overcome the isolation young people living with rare diseases can face and empower them through an adventure. Thanks to the generosity of WorkSpace, who provided us with pro bono...

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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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