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 Blayne, our Marketing and Engagement Manager: [email protected]
The Norrie Disease Foundation’s first awareness week
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...
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Mill Road Winter Fair, RAREfest and London Santa Run!
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...
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Transforming rare science into treatments
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...
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Meet Shimon, our newest volunteer!
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...
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The World Orphan Drug Conference, Europe
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,...
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Busy in Bologna: the first MCDS-Therapy annual meeting!
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...
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The Glasgow Rare Disease Showcase
The Glasgow Rare Disease Showcase 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...
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Connecting with our Cambridge community
Last weekend was a very busy one for the Findacure team. Katie and Libbie took Cambridge by storm, with Katie leading an army of Cambridge RAG bucket collectors and Libbie recruiting to the cause at Volunteer4Cambridge. Continue reading to find out how they got on....
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Finding a patient group
Receiving a rare diagnosis can be incredibly confusing and scary. Findacure is often contacted by patients desperately searching for more information and a community group to support them. While we actively refer people to the patient groups we work with, we don’t...
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Shout out for ‘Student Voices’
In this week's blog we hear why Polly Moyer - founder of Action for MdDS UK - loves judging our Student Voice essay competition and her top tips for those raring to take part in our recently launched 2018 round.The first time I was asked to join the judging panel for...
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We need your help to promote our essay competition!
Our 'Student Voice' essay competition is back for a fabulous 5th year to raise awareness of rare diseases among the doctors and researchers of the future. And we need your help to make it the biggest yet! The competition is launching on Monday 1st October and we would...
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Patient groups and the power of social research
Social research is a powerful tool when it comes to the work of rare disease patient groups. To explore this avenue further and learn how to actually go about it, Findacure teamed up with our friends and market research experts, Kudos Health Research, to deliver a...
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