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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]

Treasuring our volunteers

Volunteering for a small charity like Findacure can make a big difference to our overall productivity. We are currently searching for volunteers to help us with a range of activities, including marketing, design, communications, fundraising, project organisation,...

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Top tips from the Facebook experts

[row][two-third] Facebook is social media’s world leader. With 1.65 billion users, the platform offers the potential to reach an enormous and varied audience. You only have to look at No Make Up Selfie or ALS Ice Bucket Challenge, which raised $2.8 million and...

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Black boned and not alone

[row][two-third] We at Findacure spend a lot of time advising patient organisations how they can better their patient outreach and support. It isn’t often though, that we get to attend a workshop targeted at patients with a specific rare disease. To better understand...

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Final Ocean Crossing

[row][two-third] At the start of March, we brought together our group of teenagers once more for the final day of the Cross Your Own Oceans project. [Click here to read the launch blog] We met mid-morning near Waterloo station, to kick off our adventure day with a...

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Fund-a-cure for CHI

[row][two-third] Collaboration is key for rare disease research. Collaboration between multiple stakeholders brings together a wide range of perspectives and experiences, leading to more effective and appropriate research. This is something we aim to promote in all of...

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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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