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 Blayne, our Marketing and Engagement Manager: [email protected]
The Patient Group Handbook
[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...
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There is more than one way to show a treatment works
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 moreWhat does Rare Disease Day mean to me?
[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 moreCheck out our 2015 Impact Report
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 moreThe Student Voice – student essay competition entries published
[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 more5 reasons why strong patient groups hold the key for rare diseases
[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 moreAnother Ocean To Cross
[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 moreNavigating NICE and drug evaluations
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 moreBig Lottery Funding to prove Findacure’s Social Impact Bond idea
[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 moreCelebrating the Peer Mentoring Programme
[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...
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The Student Voice: Essay Competition Winners 2015
At the start of October 2015, we at Findacure launched the second instalment of our student essay competition. For six weeks, medical and biological undergraduate students across Europe set pen to paper (or, more likely finger to keyboard) to record their rare disease...
read more2015: Thank You
As the year draws to a close, we are looking back at all the people who have helped make 2015 such a fantastic year. While there are too many to thank individually in this blog post, we’d like to highlight some of the biggest contributions made in each month of the...
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