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 Blayne, our Marketing and Engagement Manager: [email protected]
2020 vision
My supply of mince pies is finally exhausted, which can only mean one thing - the new year is upon us. As we have returned to our desks at Findacure HQ this week, we have all been turning our thoughts to the year ahead. What will 2020 bring for Findacure and the rare...
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Looking back at 2019 – a year of change for Findacure
It has been a big year at Findacure HQ. As we prepare to close the office for Christmas, it is hard not to look back at a rather eventful 2019 with a mixture of disbelief and a pride: disbelief that half the things that happened actually occurred this year, and pride...
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Storytelling for patient groups
On Wednesday 27th November, the 2019 peer mentoring cohort met in London to attend a training session led by Findacure trustee Andy Milligan, which focused on branding, marketing and how small charities can get their stories heard. Often when we hear the phrase...
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Diving into drug repurposing
While we have dedicated a lot of time to running our annual conference to showcase excellence in the field, there has been less emphasis on educating the patient community. We thought that it was about time this changed, so on Tuesday 5th November we partnered with the MCDS-Therapy project to host our Diving into Drug Repurposing workshop at White and Case in London. This day-long event aimed to help patient organisations understand:
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Meet Sophie, our new Trustee!
In this week's blog, we'd like to introduce you to Sophie Costello, Director and CEO of Costello Medical, and one of our two newly appointed Trustees! Hi Sophie, what made you decide to become a trustee? I have been aware of Findacure and the charity’s great work for...
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Meet our new Fundraising Manager, Laura!
We’re so excited to introduce our new Fundraising Manager, Laura Thompson-Harper, who joined the Findacure team this week! Find out more about Laura
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World Orphan Drug Congress 2019
In this week’s blog, Mary Rose - our Head of Operations - tells us about Findacure’s recent trip to World Orphan Drug Congress, Europe. This week, Rick - Findacure’s CEO - and I attended World Orphan Drug Congress (WODC) in Barcelona, Spain. Now in its 10th year, WODC...
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Meet Philippa, our new Projects Officer
We’re so excited to introduce our new Projects Officer, Philippa Norman, who joined the Findacure team this week!
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Opening of The Zayed Centre for Research – a new dawn for children with rare diseases
The recent opening of The Zayed Centre for research, a dedicated rare disease centre which is a part of Great Ormond Street Hospital, is incredibly exciting for the rare disease community as a whole.
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The Manchester Rare Disease Showcase
On Tuesday 8th October 2019, Findacure ran its biggest showcase to-date! This was our first time venturing to the North West region of England, and we were so excited to see what the wonderful city of Manchester had to offer!
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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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