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!
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.
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.