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: firstname.lastname@example.org
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
[row][two-third] ‘People beyond the patients’ is the fourth part of Jessica Grace’s ‘Medicine beyond the textbook’ blog series. The blog posts, released every two months, share Jessica’s stories and thoughts as both a medical student and rare disease patient. I’m in...read more
Our student essay competition is a small but important part of the work we do here at Findacure. It encourages young people studying biological degrees, or training for a medical career, to think about rare diseases and the challenges they create for patients and...read more
This week's blog begins our new 'Meet the team' blog series. One of the most vital parts of charity life is having fundraisers, and we want to take the time to fully thank and appreciate our amazing Findacure fundraising team for all the hard work they do for our...read more
[row][two-third] As 2017 fast approaches, we at Findacure have been reflecting on how 2016 has been yet another fantastic year for us and our projects. We’ve hand-picked our greatest moments and achievements, and have put together the following timeline. It sure has...read more