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]

Treasure the Exceptions

We would like to introduce a new guest segment to our blog: ‘Treasure the Exceptions’, which will discuss different aspects to living with rare conditions. All posts under this title will be written by our guest blogger, with information kindly supplied by members of...

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Our year in summary

[row][three-fourth] January saw our first patient group workshop, on the subject of ‘Fundraising on a Budget.’ There were 42 patient advocates who came to London, with talks focused on identifying different funding sources that patient groups can apply to. Our...

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Winning Essay 2014

This year, we launched an essay competition among medical students in the UK to raise awareness about the importance of fundamental diseases. Students had to pick one of four titles and write an essay of no more than 1,500 words to enter the competition for the chance...

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Findacure’s Noble Week

This past week Flóra and Nick have been rubbing shoulders with nobility at the House of Lords and candle-lit dinners. Last Tuesday, Nick and I attended a reception held at the House of Lords, honouring the 2014 Sanofi Patient Group Bursary Scheme Winners. Over...

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Happy 2nd Birthday Findacure!

Today marks the second anniversary of Findacure’s registration with the Charity Commission of England and Wales. To celebrate the occasion, we have decided to launch a Findacure blog in which we will share team updates, feedback from conferences we have attended. We...

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