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 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].
Treatment barriers in rare diseases: The case of spinal muscular atrophy and nusinersen
The hurdles rare disease patients have to overcome when accessing treatments can seem unending. In this week's blog, Wan-hin Rex from the University of Hong Kong explores the case of spinal muscular atrophy (SMA) and the first disease-modifying drug to treat it,...
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Sneak preview! The Cambridge Rare Disease Showcase
Our 2018 Cambridge Rare Disease Showcase is fast approaching and the anticipation is building over at Findacure HQ. In this week's blog, we thought we’d give you an exciting look at some of our lightning talk speakers, and a quick insight into what they’ll be sharing...
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Meet Ike, our summer intern
Meet Findacure’s summer intern, Ikeoluwa Akintola – or Ike for short. Ike has been busy re-writing guides for our e-learning portal to improve their accessibility and flow, and she has written today’s blog about her experiences at Findacure HQ. We are very grateful...
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Fundraising for rare disease patient groups
Being able to raise funds is critical for any rare disease patient group. While many begin as volunteer-led organisations – often by parents and patients themselves – as these groups grow, look to increase the size of their team and improve the services and support...
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The rare disease diagnostic odyssey: A medical student’s perspective
Rare disease patients often face a difficult journey to diagnosis, commonly termed a ‘diagnostic odyssey’. This often involves moving from clinician to clinician, multiple misdiagnosis, unnecessary tests, and incorrect treatments. In this week’s blog, Narmadha Kali...
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Take a sneaky peek at our new website
Over the past few months, the Findacure team has been very busy writing content for our new website and honing in on its design. We’re still a few weeks from it being completely finished, but for today’s blog, we wanted to give you a taste of what’s to come....
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Dinner date with the Freemasons
On Wednesday 30th May, Findacure’s fundraising officer, Katie, attended the Cambridgeshire Masonic charitable dinner to receive a certificate celebrating our grant from the Masonic Charitable Foundation. We were thrilled to recently receive a generous...
read more When does clinical effects justify the costs of a drug?
When it comes to accessing treatments for rare diseases, the barriers standing in patients’ ways can be huge. In this week’s blog, Joanna Stenderup, a Pharmacy student at the University of Copenhagen, explores the main barrier people with Cystic Fibrosis face when...
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Team Findacure hits up ECRD
The annual European Conference for Rare Diseases, organised by Eurordis, took place this year on Friday 11th and Saturday 12th May. The Findacure team headed to Vienna to present their MCDS-Therapy poster, meet other rare disease advocates, and learn from...
read more Common things are common?
How can more medical students and researchers become involved in rare conditions? What challenges will they need to overcome to be successful? These were the questions answered by Ashleigh Draper, medical student at King’s College London, for our 2017 Student Voice...
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Undiagnosed
In the wake of Undiagnosed Children's Day, which took place on Friday 27th April, guest blogger Polly Moyer has written this week's article on the mistreatment and psychological consequences of being undiagnosed. Many people who are still waiting for a diagnosis will...
read more The wider impact of a diagnostic odyssey: Vivienne’s story
Rare disease patients often face a difficult journey to diagnosis, commonly termed a ‘diagnostic odyssey’. This regularly involves moving from clinician to clinician, multiple misdiagnosis, unnecessary tests, and incorrect treatments. Arkaprabha Banerjee, medical...
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