As a CRO specialising in clinical trials for rare and orphan diseases, Rare Disease Day has become a special cause to us. This year we wanted to give something back to the rare disease patient community and offer our employees the chance to get their families involved in some creative fundraising activities. Inspired by 2021’s theme ‘Share your Colours’ we put together a Rare Disease Day activity pack, filled with creative ideas, colourful Zoom backgrounds and colouring pages so everyone could get involved, wherever they were based.
We know how valuable the feedback of patient groups is to rare disease clinical trials, so this year our charity of choice is Findacure, a UK charity focused on building a rare disease community with patient groups at its heart. Findacure aim to transform the way that the world views rare diseases and believe that patients and patient groups have the power, knowledge and determination to drive this change themselves. Findacure work to upskill these groups so that they can have maximum impact, and connect them with the wider community, from other charities to industry, so that they can affect the change that patients need.
Find out more about Findacure here: https://www.findacure.org.uk/
Read about our other Rare Disease Day projects such as recreating the rare disease day logo with a local school.