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 Mary Rose, our Head of Operations: maryrose@findacure.org.uk

How to sustainably develop your charity

In the rare disease field, patient groups play a crucial role in supporting patients and motivating research into their overlooked conditions. However, research from Global Genes found that half of the thousands of rare diseases do not even have a disease-specific...

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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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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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