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!
Today is the last day our Executive Director, Flóra Raffai, is spending at Findacure. In this week’s blog, we asked her to reflect on her time at Findacure. What are your future plans? My immediate plans are to take a holiday in Iceland; exploring geysers, glaciers,...read more
To explore how rare disease patient groups can engage their community for fundraising, we organised a workshop on the topic last Friday (28th April). More than 30 delegates from patient groups joined us for our first ever full day workshop. Our Executive Director,...read more
In this weeks blog, Stuart Brien shares his story of running in the London Marathon for Findacure, on Sunday 23rd April. Well, the day finally arrived and I was up early and ready to go. A hearty breakfast of porridge and banana, and I was on my way to Greenwich to...read more
In this week's blog our Executive Director, Flóra Raffai, shares her top tips on how to give a good presentation. Presentations at events can be one of the most effective ways for small patient groups to raise awareness of their rare disease and their work. You have...read more
It is with a mix of sadness and gratitude that we announce the departure of our Executive Director, Flóra Raffai, from the Findacure team. Flóra started working as Project Manager in 2013, at which point she was the only Findacure team member. In late-2015, she took...read more
‘The challenges of being a 'good' patient’ is the fifth part of Jessica Grace’s ‘Medicine beyond the textbook’ blog series. The blog posts, released every two months, share Jessica’s stories and thoughts as both a medical student and rare disease patient. I am ‘that’...read more
Rare epilepsy syndrome giving hope to those living with intractable epilepsy: How rare diseases are leading the way in medical research
This week's blog, by Margarita Delgado Thompson, has been chosen from the essays submitted to our 2016 Student Voice Essay Competition. It makes a very interesting read. Rare syndromes are leading research for chronic health conditions that impact millions of people...read more
In this week's blog, David Bennett - a member of our Empowerment Advisory Committee - explores the early stages involved in setting up a patient group for a rare disease. His blog includes interviews with parents who have set up groups for rare conditions affecting...read more
This week's blog is taken from our 2016 'Student Voice' essay competition entries. Heba Abbas, in answer to the question 'The impact of a rare disease is much more widespread than its direct symptoms. Discuss how, with particular reference to the patient experience',...read more
[row][two-third] Everyone knows that Findacure really believes in drug repurposing. Finding new uses for existing pharmaceuticals has the potential to speed up and reduce the cost of delivering treatments to the rare disease patients that need them most. Luckily we...read more
In this week’s blog, Mary Rose, our Events Officer, talks about the Cambridge Half Marathon. I made my way into Cambridge bright and early on Sunday 5th March. So early in fact, that barely a soul could be seen as I ventured through the deserted streets towards...read more
To mark Rare Disease Day 2017 our collaborators at Orphanet Journal of Rare Diseases published our three winning entries to our student essay competition, 'The Student Voice'. We also presented all three of our winners with their certificates at our scientific...read more