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].
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...
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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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The Diagnostic odysseys: Undiagnosed is a diagnosis
To mark Undiagnosed Children's Day 2018, Sue Routledge, Rita Francisco, Amanda Riggs Rackerby and Eleonora Passeri have shared their own experiences of diagnosis and misdiagnosis. Their blog is split into three sections, each written by the different contributors. We...
read more Prader-Willi Syndrome: My experience as a carer, a geneticist and a medical student
This week's blog has been written by Andrew Strong, a 5th year medical student at Newcastle University. In his blog, Andrew explores the barriers preventing rare disease patients from accessing treatments, and how medics and researchers can improve access to...
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Developing your online communications
Good online communications are very important when it comes to rare disease patient groups. Being online gives newly diagnosed patients a way to find you and benefit from the services, information and support you offer. It can also allow you to build a community of...
read more Two diagnoses and counting
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. Saima Azam, medical student...
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Drug Repurposing for Rare Diseases 2018
As an events organiser, my advice is this – expect the unexpected, and prepare for it. In my almost-two years here at Findacure, this has included everything from broken down printers, last-minute venue changes, and forgetting the infamous Findacure bell. But there’s...
read more Student Voice essay winners published for Rare Disease Day
Rare Disease Day is hugely important to the rare disease community. It gives us a chance to unite and speak with a single clear voice, highlighting the problem of rare conditions to the world. One way that Findacure hopes to contribute to this global conversation is...
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Speaker feature – Conference 2018
Findacure’s annual conference, Drug Repurposing for Rare Diseases, is fast approaching and the anticipation is building here at Findacure HQ. In today’s blog Rick takes a brief look at some of the speakers who will be sharing their insights on the day. Findacure’s...
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The Student Voice – Announcing our 2017 winners
Most students at University won’t have ever considered rare diseases. Even medical students are likely to have only encountered rare genetic conditions in passing during their lectures. They are generally seen as a fringe case - not something likely to be central in...
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