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!
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!read more
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.read more
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.read more
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!read more
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.read more
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.read more
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!read more
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.read more
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!read more
Meet our new Projects Administrator Hannah Harvey!read more
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!read more
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!read more