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
Thanking our Cambridge Half Marathon runners!
What happens when you combine 10,000 runners and 13.1 miles of closed road in Cambridge? The Cambridge Half Marathon, of course! In today’s blog, we are celebrating the fantastic achievements of our six runners who completed the challenge last weekend. After an early...
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Determination, open-mindedness, curiosity and communication: What future doctors could learn from patients with rare diseases.
With yesterday's Rare Disease Day featuring the publication of our 2018 essay competition winner, we are taking the opportunity to share another of our fantastic entries in our blog today. This essay focuses on what future doctors can learn from rare disease patients...
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Good luck to our Cambridge Half Marathon runners!
13.1 miles, or 21.1 kilometres, is a long way to run. So long, in fact, that people will take an estimated 15,600 to 22,300 steps to run the distance. That’s a lot of steps. Despite this imposing physical challenge, six fantastic Findacure fundraisers have decided to...
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Research: A Focus of Rare Disease Day 2019
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...
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Sneak peek! Drug Repurposing for Rare Diseases Conference
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.
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The everyday impact of rare diseases: supporting your patient community
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...
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Why we love Rare Disease Day
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...
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2018 in review
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...
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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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