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 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 Libbie, our Projects and Communications Manager, on [email protected].
For those in the field, answering some of life’s most challenging medical questions is at the forefront each and every day. On February 28, organizations and advocates observe Rare Disease Day, a day dedicated to raising awareness of rare diseases worldwide. The day...read more
Rare Disease Day is less than three weeks away, which means there’s only one thing on our Event Manager, Mary Rose’s mind – the Drug Repurposing for Rare Diseases Conference! In the lead up to what promises to be a fantastic day, we thought, in this week’s blog, we’d give you a sneak peek at what the day has in store and the wonderful speakers who will be joining us.read more
The impact of rare diseases go far beyond the physical – they have a significant mental and social impact too. But, in the quest to find treatments and address medical issues, these other areas are often forgotten about, pushed aside, and de-prioritised, leaving...read more
There's just over one month until the biggest day in the rare disease calendar: international Rare Disease Day! As the excitement builds, we at Findacure have taken a moment to reflect on why we love this celebration of all things rare. And if you're looking to mark...read more
In this week’s blog, we are delighted to look back on the jam-packed year of 2018. Click the links to find out more about each of our highlights, including video recordings of talks at all of our events! January Winners of our 2017 essay competition announced 2017 saw...read more
Family days are fantastic events that connect rare disease communities, helping to break down the isolation that often comes with a rare diagnosis. The Norrie Disease Foundation held their own family day last month and organised an awareness week around it. They have...read more
As the countdown to Christmas gets fully underway, the Findacure team has had yet another busy weekend! Keep reading to see how we got on at the Mill Road Winter Fair, Cambridge's RAREfest, and the London Santa Run. Mill Road Winter Fair - Katie We started the...read more
Translational research can sometimes sound like a bit of a buzzword, particularly to those of us outside the research field. This reaction can make us instinctively switch off, and fail to engage with what is actually a crucial topic. Translational research IS the...read more
Hi Shimon. It would be great if you could tell us a little bit about yourself. I am currently in upper sixth and am completing the International Baccalaureate at Parkside Sixth. I study History, Physics and Anthropology at higher level as well as English, Maths and...read more
In today's blog our CEO Rick tells us about his recent trip to the World Orphan Drug Congress last week. A big part of our work at Findacure is raising awareness about the work of the rare disease community. This can involve speaking to a wide diversity of people,...read more
The last month has been incredibly busy for the Findacure team: we’ve been here, there and everywhere! In addition to launching our Student Voice essay competition, we travelled to Glasgow for our Rare Disease Showcase, attended the EyeforPharma summit, did a street...read more
On Wednesday 10th October, Findacure embarked on its biggest adventure yet – The Glasgow Rare Disease Showcase! As our first venture into Scotland, this was an entirely new experience for the team, and more than ever before, we weren’t too sure what to...read more