CJD Support Network represented at inaugural meeting of Rare, Genetic and Undiagnosed Conditions APPG
We are hugely grateful to Alice Groux, who represented the CJD Support Network at the inaugural meeting for the All Part Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions at Portcullis House, raising political awareness of CJD and asking for research and diagnosis funding. Alice shares her personal experience of the meeting in the below article.
Whatever form of CJD or prion disease you have a personal connection with, if you’d like to help us raise awareness amongst MPs then please do click HERE to access a template email which you can personalise and send to your MP. Please remember to copy us in at [email protected] if you do send the email, so that we can keep track of how many MPs have been contacted and how many have responded. Not sure who your MP is? click HERE to put in your postcode and find the name of your MP and their contact details.
