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!
This is the year that you reach new milestones, as either a mentee or mentor on the Patient Group Mentoring Programme! Make 2021 the year of growth. Increase your confidence, knowledge and skills alongside your fellow rare disease patient groups and advocates. Learn why you should apply now!read more
Still haven’t claimed your FREE ticket to Drug Repurposing for Rare Diseases 2021? Here’s 5 reasons why you should attend on the 15th – 16th June.read more
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!read more
As the world starts to adapt yet again and we enter a new phase following the pandemic, our team would like to extend its thanks to all those who have supported us on this journey. Thank you to all who have stood by rare disease patients and the work Findacure does – we couldn’t do it without you!read more
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!read more
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!read more
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