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]
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...
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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...
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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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Peer mentoring programme: Meet Wendy
Following the launch of applications for our 2018 peer mentoring programme, we would like to share the story of one graduate, Wendy Horrobin, to show what patient groups can achieve on the scheme. Wendy’s 9 year-old son was born with Norrie disease. Norrie disease...
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Accessing medicines for rare diseases
Treatments for rare diseases are few and far between, and when they do exist, patients - understandably - want access to them. However, accessing medicines is no easy process and patients often face endless obstacles in getting drugs licenced and approved for...
read moreNewcastle Rare Disease Showcase review
Newcastle is known for many things – brown ale; the Geordie accent and love of conversation; Ant and Dec; some of the world’s most passionate football supporters; and being voted the best city in the UK in 2014. Importantly, though surprisingly to some, Newcastle is...
read moreWeaker muscles, stronger family
This week's blog shares the story of Kerry Shippey whose son George who was diagnosed with Duchenne Muscular Dystrophy less than a year ago. It provides an eye-opening insight into life pre- and post-diagnosis of a rare condition. George was our first born son. He...
read moreEncouraging patient group-industry interaction
One of our core beliefs at Findacure is that success within the rare disease community is reliant upon the collaboration of its members. In order to ensure progress, patient groups, clinicians, pharmaceutical companies, biotech industries and academics must work...
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