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 Mary Rose, our Head of Operations: maryrose@findacure.org.uk
Meet Jo, our new Trustee!
In this week's blog, we'd like to introduce you to Jo Pisani. She has been a partner at PwC, where she lead the UK Pharmaceuticals and Lifesciences business. Jo is one of our two newly appointed Trustees! Hi Jo, what made you decide to become a trustee? I retired from...
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Lucy’s Story: A Mothers Perspective
Lucy McKay grew up watching her mother grow a rare disease patient support group into a trail-blazing charity. Her eldest brother was affected by MPS II which led her mother to found the MPS Society. Lucy grew up alongside the patient group and when she went to...
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Women’s Rare Experiences #IWD2020
"How will you help forge a gender equal world? Celebrate women's achievement. Raise awareness against bias. Take action for equality." (IWD.com, 2020) The 2020 #EachforEqual campaign runs all year long and definitely hasn't become less empowering since International...
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Drug repurposing for rare diseases conference 2020
Every year Findacure holds its conference – Drug Repurposing for Rare Diseases – in late February to celebrate Rare Disease Day. This is a chance for a diverse collection of people with an interest in rare diseases and drug repurposing to gather together and share their knowledge and experiences, and hopefully drive forward the redevelopment of old drugs for rare patients.
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Fantastic Findacuries
The first Friday of March is Employee Appreciation Day, so in this week’s blog Rick gives us a quick insight into the fantastic member of the Findacure team, the work they do on a daily basis, and a few of their quirkier features.Mary Rose As Head of Operations, Mary...
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Rare Disease Week
It has been an exciting and slightly frantic week for the Findacure team, and for everyone in the rare disease world. The build up to Rare Disease Day has been high paced, with events and announcements galore, all with the aim of raising more awareness of rare disease...
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Speaker Spotlight – Drug Repurposing for Rare Diseases 2020
With our annual conference, Drug Repurposing for Rare Diseases, just over a week away, things are getting busy in the office. We are preparing delegate packs, writing talks, and chatting to our venue and speakers to make sure the event is our best ever. Earlier this...
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Leading a rare patient group
Our latest workshop on the 22nd January focused on the topic of leadership within a rare patient group. We all know that leadership is a skill we should be very aware of and try to be good at but sometimes it’s hard to know how to start thinking about your own leadership skills. In a patient group context when employees and volunteers are often busy with other things, leaders don’t always have time to reflect on and improve their practice.
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Rare Disease Day 2020: Worldwide, Strong and Proud
There’s only a month to go until Rare Disease Day 2020 and this year’s theme focuses on re-framing rare, to show people that rare is more common than they might think and although rare diseases pose everyday challenges for patients they also foster the...
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Speaker Spotlight – Drug Repurposing for Rare Diseases 2020
The whole Findacure team are starting to get excited as our annual conference, Drug Repurposing for Rare Diseases, is less than a month away. Having just released our shiny new conference website with loads of information about the upcoming event, we thought that this...
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The winning Student Voice
The Student Voice Prize 2019 proved to be our most popular yet. We received more entries than ever before, from 19 different universities in 6 different countries. The standard was high as ever and all of the judges were very impressed with the quality of the entries…
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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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