In January 2021, we hosted a three-day online workshop in collaboration with Breaking Down Barriers that focused on how patient groups can improve their engagement with ethnic minority groups to better serve their rare communities. If you weren’t able to attend, catch up on all the action with a summary and workshop recordings!
Ok, so it might not be as good of a catch phrase as Hugh Grant’s ‘Love actually is all around,’ but hear me out because it’s true. We all know that rare diseases are individually rare, but collectively common. As it turns out, they are pretty commonly found all around us too – we just don’t always notice them straightaway. This week’s blog highlights just how common rare diseases are in everyday life!
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.
Back in September, we hosted a three-day online workshop that focused on how patient groups can successfully collaborate with stakeholders from across the rare disease spectrum. The goal of the workshop was to help patient groups collaborate with industry, pharma and other rare disease patient groups so that the rare community can advocate for change as one, united force. See what you missed!
This week, we take a look at the Findacure RareChat sessions that have been running throughout lockdown that offer a chance for patient group representatives to have informal chats, network and share resources and experiences.