Rare Disease Patient Network

The Welsh Rare Disease Patient Network includes over 200 patients, carers, patient organisation representatives and professionals supporting those affected by rare diseases. Network members are invited to take part in regular events including the annual Rare Disease Patient Network meeting, Cross Party Group meetings, the annual Rare Disease Day Senedd Reception, and Genomics Cafes.

Annual Rare Disease Patient Network Meeting

Additionally, the network provides opportunities to become involved in research focusing on genomics and rare diseases, and also advertises opportunities to participate in relevant research studies via the Rare Disease Research Gateway.

To join the Rare Disease Patient Network please email: WalesGenePark@Cardiff.ac.uk