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 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].
Meet the team: Dare for Rare Skydive
This week’s blog continues our “Meet the team” blog series, introducing our fundraisers to the Findacure community. Meet our Dare for Rare Skydiving team! In August, Findacure will see some of its bravest supporters launching themselves from a plane over 13,000 feet...
read moreSo far in 2017…
It’s been mega busy lately at Findacure HQ, so busy in fact that we completely missed the halfway point of 2017! However, as things begin to slow down (who am I kidding?) and the days start to get shorter (winter is coming), Mary Rose has taken some time out to...
read moreChronic Paroxysmal Hemicrania: A Mother’s Account
This week’s blog features another of our 2016 Student Voice Essay Competition submissions. Jamileh Clifford, a fourth year medical student at Liverpool University, draws upon her mother’s experiences to explore how the impact of a rare disease is much more...
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Raremark do the London to Cambridge cycle!
The annual London to Cambridge cycle ride is a key event in any keen cyclist’s or fundraiser’s calendar. This year’s challenge, which took place on Sunday 2nd July, was met by our trustee Julie Walters and three of her Raremark colleagues. In beautiful summer...
read moreRemoving barriers – a journey in the world of disability and board games
This week's blog has been written by Toyah Wordsworth, an active member of our peer mentoring programme. Toyah has Friedreich's ataxia, a rare neurodegenerative condition that affects coordination and balance, amongst other symptoms. In addition to her role as Chair...
read moreSetting 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...
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