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: email@example.com
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
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...read more
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
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...read more
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
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...read more
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
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...read more
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...read more
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...read more
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...read more
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 more