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].
Peer mentoring programme: Meet Wendy
Following the launch of applications for our 2018 peer mentoring programme, we would like to share the story of one graduate, Wendy Horrobin, to show what patient groups can achieve on the scheme. Wendy’s 9 year-old son was born with Norrie disease. Norrie disease...
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Accessing medicines for rare diseases
Treatments for rare diseases are few and far between, and when they do exist, patients - understandably - want access to them. However, accessing medicines is no easy process and patients often face endless obstacles in getting drugs licenced and approved for...
read moreNewcastle Rare Disease Showcase review
Newcastle is known for many things – brown ale; the Geordie accent and love of conversation; Ant and Dec; some of the world’s most passionate football supporters; and being voted the best city in the UK in 2014. Importantly, though surprisingly to some, Newcastle is...
read moreWeaker muscles, stronger family
This week's blog shares the story of Kerry Shippey whose son George who was diagnosed with Duchenne Muscular Dystrophy less than a year ago. It provides an eye-opening insight into life pre- and post-diagnosis of a rare condition. George was our first born son. He...
read moreEncouraging patient group-industry interaction
One of our core beliefs at Findacure is that success within the rare disease community is reliant upon the collaboration of its members. In order to ensure progress, patient groups, clinicians, pharmaceutical companies, biotech industries and academics must work...
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The Cambridge Rare Disease Showcase
On Thursday 24th August, we held the latest instalment of our Rare Disease Showcase – this time in our home town of Cambridge. Thanks to the generous support of our sponsor Collaborative Drug Discovery, and supporter Whiskers LLP, we hired out Baroosh for the evening,...
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Our first webinar series is complete
We at Findacure believe support groups hold the key to a better future for rare disease patients. They are in the best place to reach out to patients and provide them with the support they need, they are the most motivated to push research forward, and they are a...
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The role of rarity and peculiarity in scientific progress
This week’s blog features another of our 2016 Student Voice Essay Competition submissions. Jungwoo Kang, a student at the Barts and London School of Medicine and Dentistry (QMUL), explores how rare diseases lead the way in medical research and clinical innovation....
read moreSnowdon with Mummy
This week's blog is written by Shelley Simmonds, mummy to 4-year-old Fraser who has Duchenne Muscular Dystrophy. Shelley shares her story of climbing Mount Snowdon, carrying her son on her back the whole way, and raising money for the UK charity Harrison's Fund. Have...
read moreMeet 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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