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: firstname.lastname@example.org
[row][two-third] Everyone knows that Findacure really believes in drug repurposing. Finding new uses for existing pharmaceuticals has the potential to speed up and reduce the cost of delivering treatments to the rare disease patients that need them most. Luckily we...read more
In this week’s blog, Mary Rose, our Events Officer, talks about the Cambridge Half Marathon. I made my way into Cambridge bright and early on Sunday 5th March. So early in fact, that barely a soul could be seen as I ventured through the deserted streets towards...read more
To mark Rare Disease Day 2017 our collaborators at Orphanet Journal of Rare Diseases published our three winning entries to our student essay competition, 'The Student Voice'. We also presented all three of our winners with their certificates at our scientific...read more
This week’s blog has been written by our Head of Research, Rick Thompson, reflecting on Rare Disease Day 2017 and our fourth annual conference. Tuesday, 28th February 2017 was the 10th annual Rare Disease Day – I hope it didn’t escape your notice. Every year it...read more
We are delighted to announce the establishment of a close partnership with Healx to accelerate our drug repurposing for rare diseases project. Drug repurposing matches existing off-patent drugs to other specific diseases, which is much cheaper and faster than novel...read more
This week’s blog continues our “Meet the team” blog series, introducing our fundraisers to the Findacure community. Meet our Firewalking team! Last Saturday, we held Findacure’s first “Dare for Rare” event, inviting fundraisers to walk across hot coals for rare...read more
The rare repurposing open call is a collaborative project between Findacure, Cures Within Reach, and Healx. We are searching for existing drug repurposing ideas for rare diseases that have yet to receive a full clinical trial. Our primary aim is to demonstrate the...read more
Rare disease patients can face an uphill battle when it comes to diagnosis and treatment. According to Rare Disease UK’s 2015 report ‘The Rare Reality’, the average rare disease patient consults with five doctors, receives three misdiagnoses, and waits four years...read more
This week's guest blog is written by Virgil Anderson. He shares his story below. Virgil was recently diagnosed with mesothelioma, a rare form of cancer caused by his exposure to asbestos while working in demolition and excavation. When he was diagnosed with...read more
This week's blog continues our "Meet the team" blog series, introducing our fundraisers to the Findacure community. Meet Stuart Brien, our 2017 London Marathon runner! In April, Stuart will be taking on the 26.2 mile London Marathon challenge. We are so grateful to...read more
Scientific advice is crucial in the rare disease world. With few researchers working on any given rare disease it is important for patient groups to build connections with the scientific community. This helps them to understand their disease, gives them a platform to...read more
The keen Findacure blog readers among you will have seen a blog late last year introducing Deborah, a member of our brand new Empowerment Advisory Committee. We are proud to have established this Committee late last year in an effort to bring more of the rare disease...read more