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 Mary Rose, our Head of Operations: maryrose@findacure.org.uk
Setting up a patient group
Patient groups play a vital role in the rare diseases community - providing support, guidance and information to patients and their family members. But many groups don’t know where to start when it comes to establishing themselves and getting off the ground. With this...
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Hospital Beds and Board Games
This week's blog features another of our 2016 Student Voice Essay Competition submissions. Kiana Bowden, a medical student at St Andrews University, explores how the impact of a rare disease is much more widespread than its direct symptoms, drawing metaphors between...
read moreMeet David: a person living with Occipital Horn Syndrome
This week's blog by David Rose introduces what it's like to live with a rare condition, including a hope for better treatments for this multi-symptomatic disorder. My name is David Rose. I’m 28 years old, and I have ‘Occipital Horn Syndrome (OHS)’. Formerly considered...
read moreFindacure on Tour – The Cardiff Rare Disease Showcase
Findacure is a UK charity, and we are increasingly working to bring our events to people all around the United Kingdom. Our networking events, which we have now named showcases, are ideal for this. They act as a great place for patient groups to meet one...
read moreFlóra’s Fond Farewell
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 moreEngaging your community for fundraising
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 moreThe London Marathon: My Story
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 moreTop tips on presenting
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 moreSaying goodbye to our Executive Director, Flóra Raffai
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 moreMedicine Beyond the Textbook: The challenges of being a ‘good’ patient
‘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 moreRare 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 morePatient Support Group – In the beginning
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...
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