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]
Meet our 2019 Patient Engagement Committee! (part I)
After our patient engagement committee kick-off meeting in London last week, we would like to introduce you all to our newly-appointed committee whose expertise will enable us to shape the work we do in the rare disease community!
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‘A stepping stone’: David’s clinical trial story
This week’s blog is written by a member of the rare disease community, David Ross, who is currently taking part in a clinical trial for Cowden Syndrome in the hope that it will improve the lives of others suffering from the condition.
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Meet Taryn, our new Communications Officer
We're so excited to introduce our new Communications Officer, Taryn Challender, who joined the Findacure team this week! Find out more about Taryn below: What were you doing before you joined Findacure? I spent the last three years studying English at Gonville &...
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Patient as Professor: Lessons to be learned from the rare diseases community
This week’s blog features another of the fantastic entries we received to our 2018 Student Voice essay competition. Here, Sarah-Ethel (Sally) Justus from Harvard Medical School explores what future doctors can learn from rare disease patients. When Elizabeth, a...
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Meet Alan, our 2019 London Marathon runner!
This week’s blog continues our “Meet the team” series, introducing our brilliant fundraisers to the Findacure community. On 28th April, Alan Blackham will be taking on a huge challenge to raise money for Findacure – running the 2019 London Marathon! Please read his...
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Dying to breathe – Comparing Idiopathic Pulmonary Fibrosis in the world’s largest economies
This week's blog features another of the fantastic entries we received to our 2018 Student Voice essay competition. Here, Anna-Lucia Koerling from the University of Cambridge compares the diagnosis and delivery of treatments for Idiopathic Pulmonary Fibrosis between...
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The Eurordis Winter School 2019
In this week’s blog Rick tells us all about his day-long visit to the Eurordis Winter School in Paris, where he gave a talk on drug repurposing as a strategy for rare disease patients.
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Drug Repurposing for Rare Diseases 2019
On Wednesday 27th February 2019 we held the Drug Repurposing for Rare Diseases Conference at the Royal College of Nursing in London. As our sixth annual conference, we were keen to make this year's event the best yet, and we were delighted that over 110 people from...
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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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