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
Celebrating three years with Mary Rose!
This week marks Mary Rose's third year at Findacure. In today's blog she looks back on her time here so far and shares some of her favourite memories through the art of photography. This week I'm celebrating my third-year anniversary here at Findacure. Wow! I can...
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What makes a good lightning talk? Findacure’s top four tips
So you’ve attended our events and are an expert in your disease area. You’ve done all the research and are passionate about raising awareness of rare diseases. Then why not do a lightning talk at our upcoming Rare Disease Showcases in Cambridge and Manchester? ‘Oh but...
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Meet our 2019 Patient Engagement Committee! (part II)
After our patient engagement committee kick-off meeting in London earlier this month, 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! Every single one of our...
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The Power in a Name: Teaching future doctors the value of providing a definitive diagnosis in the support of patients with rare disease
This week’s blog features one of the outstanding entries we received for our 2018 Student Voice essay competition. Here, Megan McGlone from the University of Glasgow explores the impact of diagnosis on rare disease patients’ ability to identify with a community and receive the support they so urgently require.
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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!
read more
‘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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