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]
Erin Paterson: From HD to Happiness
This week’s blog was written by Erin Paterson who discusses her experiences of living with Huntington’s Disease (HD) and trying to start a family. Read her guest blog now and let us know what you think on social media!
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Sonia Sankoli: Dhian’s Story
This week’s blog was written by Sonia Sankoli. Sonia is the Communications Officer at Soft UK, and her son, Dhian, was diagnosed with Trisomy 13. In his honour, we are sharing their story to mark Trisomy Awareness Month this March.
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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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Relive The Virtual Rare Disease Showcase
Relive The Virtual Rare Disease Showcase! You can now read a summary of the event and watch both Main Stage and Breakout Session recordings on-demand. Thank you for coming to the first-ever Rare Showcase of its kind and we look forward to seeing you again at another Findacure event soon!
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A look back at this year’s guest blogs in honour of Rare Disease Day!
In honour of Rare Disease Day 2021, we wanted to highlight the wonderful patient stories that have been shared with us throughout the year. Read one or read them all. This is all of our story and it’s been a privilege sharing your journeys on our blog. Happy Rare Disease Day! We’ll never stop fighting for you and the rare community.
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Martha Harlam: Hopes For The Future
This week’s blog was written by Martha Harlam, founder of Ataxia Awareness – Information – Hope. Ataxia has defined most of her life since she was first diagnosed in 1988 at 38 years old. This is her story!
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Meet Hannah our new Projects Administrator!
Meet our new Projects Administrator Hannah Harvey!
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The winners of The 2020 Student Voice Prize are here!
After three months and many impressive submissions and patient group pairings, we have the four 2020 Student Voice Prize winners! Please say hello and congratulations to our 2020 overall winner and three 2020 runner-ups!
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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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What the new UK Rare Disease Framework means for you
If you haven’t had a chance to read the new UK Rare Disease Framework in full, we’ve summarised its contents for you in a simple, easy-to-read blog. Learn what the UK Rare Disease Framework means for you and let us know your thoughts in the comments or by tagging us on social media!
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Our 2020 vision wasn’t great, so we got glasses to help us see better into 2021!
We’re extremely optimistic about the new year and want to share with you what we’re most looking forward to in 2021 as a team. Hear from Mary Rose, Phil, Laura, Blayne and Rick on what they’re most excited for this year and let us know your thoughts in the comments.
Happy New Year! Here’s to making it a great one.
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Welp, we didn’t see 2020 coming: What an unprecedented year it’s been!
It’s been a long road, but 2020 is finally cancelled. Before we ride off into the sunset and 2021, join us as we reflect back on a year that no one saw coming; not even Nostradamus himself and that’s saying something!
Here is your whistle-stop tour of Findacure’s 2020 year in review. Highlights only!
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