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 Taryn, our Communications Officer: taryn@findacure.org.uk
Building a rare disease patient registry
Building a rare disease patient registryOn 17th September, Findacure ran a workshop in London entitled 'Building a rare disease patient registry'. The event was comprised of talks about registries from a range of stakeholders across the rare disease field, including...
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Our trip to RAREsummit19
On 23rd September, Rick and Mary Rose attended Cambridge Rare Disease Network’s RAREsummit at the Wellcome Genone Genome Campus in Hinxton.
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Goodbye from Libbie, our outgoing Patient Group Development Manager
This week we said a final goodbye to our Patient Group Development Manager, Libbie. Libbie has been working at Findacure for the past four years but is moving on in pursuit of a new challenge. Next month she will start her new position as a Graduate Analyst at the...
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Show your support for the Student Voice!
Looking to raise awareness of your rare disease among medical professionals? Then look no further as we have the ideal opportunity for you.
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Rare disease spotlight: EB 2020
Taking place from 19 – 23 January 2020 in London, UK, for the first time the world’s leading experts in EB research, clinical management, and the EB Community will be brought together in one place – the 2020 EB World Congress.
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Cambridge Rare Disease Showcase 2019
Cambridge is one of the UK’s leading cities for scientific and medical research, with a cluster of patient and advocacy groups, clinicians, life science networks and academics focused on rare diseases. It also happens to be the location of Findacure HQ. This is why, each year, we hold the Cambridge Rare Disease Showcase, a highlight of our social calendar held right in the heart of the hustle and bustle of this great city.
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Danny’s fortnight at Findacure
In this week’s blog, we would like to introduce you to our new volunteer, Danny de Vries Robbe. Danny joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.
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Takeaways from Strategy Day
On Friday 2nd August, team Findacure held a strategy day at Mary Rose’s house to discuss our aims over the next year, accompanied by her adorable cat, Jasper.
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Seven years in the making: SONIA 2 and DevelopAKUre results analysed and positive trends identified!
Findacure would like to congratulate our co-founder Nick Sireau and office mates the AKU Society on the news that analysis of data from the SONIA 2 clinical trial has now been completed and very positive trends have been identified!
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Marco’s fortnight at Findacure
In this week’s blog, we would like to introduce you to our new volunteer, Marco Gallotta. Marco joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.
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Findacure on Tour!
The past few weeks have certainly been varied for the team here at Findacure! Taryn, Mary Rose, and Rick have all been out and about raising awareness of rare diseases!
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‘Growing your patient community’ webinar
On 11th July, our Patient Group Engagement Manager, Libbie, ran a webinar entitled ‘Growing your patient community: identifying patients and groups online’.
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