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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 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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Discover The CharityWorks Programme from our Projects Coordinator, Philippa

Our Projects Coordinator, Philippa, first found Findacure through CharityWorks, a leadership development graduate programme which focuses on the 5 C’s: Conscious, Curious, Challenged, Connected and Change. In this week’s blog, Philippa takes us through what she learnt by completing this 12-month programme. She highlights how her learnings relate to the 5 C’s of the CharityWorks programme.

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The power of collaboration: How one patient group partnered with medical researchers to find a treatment for a rare cancer

This week’s blog was written by Jo Williamson, Chairman of The Phaeo And Para Cancer Charity! His story highlights the power of collaboration between individuals, patient groups and medical professionals when looking to create a new innovative treatment for a rare condition. Read his story!

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