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 Taryn, our Communications Officer: [email protected]
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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Patient advocacy newsletters to subscribe to today!
The world of patient advocacy can be busy and confusing at times, and finding up-to-date information about all the different projects and events can be difficult. This is why today’s blog shares five UK/European newsletters all rare disease patient advocates should...
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The extraordinary alchemy of positive action
To mark World Duchenne Awareness Day, this week's blog has been written by Nick Taussig, a parent of two boys living with Duchenne Muscular Dystrophy. He shares the story of how he and his friends designed and built a home adapted to his sons' needs. It's a...
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Time to touch the sky: Dare for Rare skydive 2018
On Saturday 25th August, Team Findacure completed the 2018 Dare for Rare skydive and raised over £1,500 for the rare disease community – huge thank you to our team and everyone who donated! In this week’s blog we hear from Saul Woodford, one of our brilliantly brave...
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The Cambridge Rare Disease Showcase 2018
Cambridge is one of the UK’s leading cities for scientific and medical research, with a cluster of patient and advocacy groups, clinicians, life science networks and academics focused on rare diseases. It also happens to be the hometown of ourselves at Findacure....
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Meet the team: Great Scottish Swim Aquathlon
This week’s blog continues our “Meet the team” blog series, introducing our brilliant fundraisers to the Findacure community. On 25th August, Charlotte Proud will be taking on a huge challenge to raise money for Findacure - braving a 800 metre swim in chilly Loch...
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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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Rare diseases: A holistic approach
How can more medical students and researchers become involved in rare conditions? What challenges will they need to overcome to be successful? In this week's blog, Hanusha Durganaudu from Monash University Malaysia explores these questions. His blog was originally...
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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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