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!
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...read more
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 more
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 more
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...read more
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 more
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...read more
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 more
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 more
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...read more
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 more
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 more
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 more