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]
[row][two-third] It was a dense, foggy morning when the Findacure team rolled up to the infamous Silverstone circuit. Shivering as they gathered their belongings from the car, they dwelled on the ordeal about to face them: 13 miles, or 21 kilometres, of running on a...read more
On Rare Disease Day, 29th February, Findacure hosted our third annual scientific conference, focussing on drug repurposing for rare diseases. The question on your lips may well be, why? Well, to answer that, we should first clarify what a conference even is. The font...read more
[row][two-third] We are delighted to announce that The Patient Group Handbook, edited by our founders, has been published! The book consists of 25 practical chapters about research and drug development in the rare diseases field, including: How to set up and manage a...read more
Mark Jacunski, a medical student from King's College London, is one of our three essay competition winners. His writing explores the medical and ethical issues involved in treating rare diseases with off-label prescriptions. In 1999, Jesse Gelsinger became the first...read more
[row][two-third] Our last blog in the build up to Rare Disease Day has been written by Maria Piggin, founder of PNH Support. Paroxysmal Nocturnal Haemoglobinuria (PNH) is a rare blood disorder where the bone marrow produces blood cells without their usual protein...read more
2015 was a fantastic year for Findacure. While continuing to achieve high standards in our existing projects, such as our patient training workshops, we also launched our peer-mentoring scheme, Cross Your Own Oceans project, and online portal. We hired another member...read more
[row][two-third] In the lead up to Rare Disease Day 2016, our student essay competition partners at Orphanet Journal of Rare Diseases and BioMed Central, published some of the best entries from our 2015 student essay competition. Three essays were published on BMC's...read more
[row][two-third] The opening speech of People Powered Health, a Nesta Health Lab conference held last week, was given by Simon Stevens, Chief Executive of NHS England. His speech focused on the idea that healthcare is a social movement: it responds to and is informed...read more
[row][two-third] In 2015, we ran our first Cross Your Own Oceans; a project which aims to overcome the isolation young people living with rare diseases can face and empower them through an adventure. Thanks to the generosity of WorkSpace, who provided us with pro bono...read more
The number of treatments (orphan drugs) being developed for rare diseases is on the rise. In the USA, FDA orphan designations have steadily increased year on year since 2000 (EvaluatePharma – Orphan Drug Report 2014). While this is great news, these orphan drugs come...read more
[row][two-third] Over the past year or so, the Findacure fans amongst you may have heard us mention social impact bonds, once or twice… or maybe a little more. It’s certainly not like we think about them day and night, or anything – well, not all of us. Now the reason...read more
[row][two-third] At Findacure, we believe patient groups are vital partners in addressing the challenges posed by rare diseases; they offer crucial support to individual patients and represent the patient voice in research. As a result, one of our main aims as a...read more