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].
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....read more
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 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...read more
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
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...read more
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