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 Taryn, our Communications Officer: firstname.lastname@example.org
Hi Shimon. It would be great if you could tell us a little bit about yourself. I am currently in upper sixth and am completing the International Baccalaureate at Parkside Sixth. I study History, Physics and Anthropology at higher level as well as English, Maths and...read more
In today's blog our CEO Rick tells us about his recent trip to the World Orphan Drug Congress last week. A big part of our work at Findacure is raising awareness about the work of the rare disease community. This can involve speaking to a wide diversity of people,...read more
The last month has been incredibly busy for the Findacure team: we’ve been here, there and everywhere! In addition to launching our Student Voice essay competition, we travelled to Glasgow for our Rare Disease Showcase, attended the EyeforPharma summit, did a street...read more
The Glasgow Rare Disease Showcase On Wednesday 10th October, Findacure embarked on its biggest adventure yet - The Glasgow Rare Disease Showcase! As our first venture into Scotland, this was an entirely new experience for the team, and more than ever before, we...read more
Last weekend was a very busy one for the Findacure team. Katie and Libbie took Cambridge by storm, with Katie leading an army of Cambridge RAG bucket collectors and Libbie recruiting to the cause at Volunteer4Cambridge. Continue reading to find out how they got on....read more
Receiving a rare diagnosis can be incredibly confusing and scary. Findacure is often contacted by patients desperately searching for more information and a community group to support them. While we actively refer people to the patient groups we work with, we don’t...read more
In this week's blog we hear why Polly Moyer - founder of Action for MdDS UK - loves judging our Student Voice essay competition and her top tips for those raring to take part in our recently launched 2018 round.The first time I was asked to join the judging panel for...read more
Our 'Student Voice' essay competition is back for a fabulous 5th year to raise awareness of rare diseases among the doctors and researchers of the future. And we need your help to make it the biggest yet! The competition is launching on Monday 1st October and we would...read more
Social research is a powerful tool when it comes to the work of rare disease patient groups. To explore this avenue further and learn how to actually go about it, Findacure teamed up with our friends and market research experts, Kudos Health Research, to deliver a...read more
The world of patient advocacy can be busy and confusing at times, and finding up-to-date information about all the different projects and events can be difficult. This is why today’s blog shares five UK/European newsletters all rare disease patient advocates should...read more
To mark World Duchenne Awareness Day, this week's blog has been written by Nick Taussig, a parent of two boys living with Duchenne Muscular Dystrophy. He shares the story of how he and his friends designed and built a home adapted to his sons' needs. It's a...read more
On Saturday 25th August, Team Findacure completed the 2018 Dare for Rare skydive and raised over £1,500 for the rare disease community – huge thank you to our team and everyone who donated! In this week’s blog we hear from Saul Woodford, one of our brilliantly brave...read more