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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]

Rare diseases actually are all around

Ok, so it might not be as good of a catch phrase as Hugh Grant’s ‘Love actually is all around,’ but hear me out because it’s true. We all know that rare diseases are individually rare, but collectively common. As it turns out, they are pretty commonly found all around us too – we just don’t always notice them straightaway. This week’s blog highlights just how common rare diseases are in everyday life!

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Seeking similarities in difference: How COVID-19 has highlighted the dual importance of individual experience and unifying commonality in rare disease research

This week’s blog was written by Remarez Sheehan, a 4th year medical student from the University of Oxford. Remarez entered The 2020 Student Voice Prize and was shortlisted for the brilliant essay “Seeking similarities in difference: How COVID-19 has highlighted the dual importance of individual experience and unifying commonality in rare disease research.” Read Remarez’s essay now!

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Experience Huntington’s Disease Alliance’s Family Matters campaign

This week’s blog was written by four Huntington’s disease charities across the UK and Ireland, who are working together to raise awareness of the impact of Huntington’s disease, not just on individuals, but on families too. The Huntington’s Disease Alliance UK and Ireland launched the Family Matters campaign at the beginning of May 2021 with the hopes of promoting an improved understanding of the unique pressures of the disease upon the families it affects. View the campaign!

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Perks of a pandemic: lessons in improving the delivery of clinical rare disease research

This week’s blog was written by Rosaline de Koning, a 4th year medical student from Oxford University. Rosaline entered The 2020 Student Voice Prize and was shortlisted for her brilliant essay “Perks of a pandemic: lessons in improving the delivery of clinical rare disease research.” Read her essay now and be sure to enter The 2021 Student Voice Prize when it returns this Autumn!

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The benefits of working with known drugs in the search for rare disease treatments

This week’s blog was written by our 2020-2021 Corporate Partner, Healx! This is the first of their six-part blog series, which will explore the power of drug repurposing in rare disease from a wide variety of perspectives.

Healx is hosting a “Kickstart Drug Repurposing: Finding Treatments for your Rare Disease through Drug Redevelopment” workshop at our virtual Drug Repurposing for Rare Diseases 2021 Conference. Get to know their team and claim your free ticket now to join us on the 15th – 16th June!

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Rare Disease Day at Royal Holloway Speed Dating Event

On Friday, 26 February 2021, Royal Holloway ran a virtual event for Secondary School years 10, 11 and 12 in honour of Rare Disease Day. Our Marketing and Engagement Manager, Blayne, signed up for the speed-dating round and spoke to year 10, 11 and 12 students about Findacure. She only had seven minutes per school to deliver her presentation and rotated between seven virtual classrooms. Blayne recaps her talk here!

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A look back at our online workshop ‘Supporting your community: Mental health and wellbeing’

Back in March, we hosted a three-day online workshop that focused on mental health and wellbeing within the rare community. The goal of the workshop was to provide patient organisations with an in-depth understanding of mental health and give them the tools to recognise and cope with different mental health situations or challenges that could arise.

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Ger Renton: ‘Ethan and Me’

This week’s blog was written by Geraldine Renton, author of Ethan and Me. Ger’s firstborn son, Ethan, had a very rare genetic condition called MPS II Hunter Syndrome and sadly passed away in September 2020. She chronicled her adventures with Ethan on her award-winning blog, ‘It’s me and Ethan’, until she decided to approach Tribes Press to memorialise their story in book form. Ger was kind enough to write a guest blog for us to share her time with Ethan.

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