Perks of a pandemic: lessons in improving the delivery of clinical rare disease research

Perks of a pandemic: lessons in improving the delivery of clinical rare disease research

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!

A look back at our online workshop ‘Successful collaborations: engaging the people that matter’

A look back at our online workshop ‘Successful collaborations: engaging the people that matter’

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!