Wales Gene Park works closely with the Rare Disease community in Wales and provides advice and support to enable them to organise and host local events such as information days, family events and research meetings for their specific communities. If you would like support with setting up an event for your community, please contact Emma (link to meet the E & E team).

Events organised by Wales Gene Park and Genetic Alliance UK include:

Rare Disease Annual Patient Network meeting

  • Annual meeting of the network which takes place in autumn. The meeting involves guest speakers, exhibitions from patient organisations and an opportunity to network with patients, carers, patient organisations and professionals supporting those affected by rare diseases.

Please note: the 2020 autumn Rare Disease Network meeting will be virtual due to the Coronavirus pandemic

 

Cross-Party Group meetings

  • Regular meetings of the Cross-Party Group (CPG) for Rare, Genetic & Undiagnosed conditions chaired by Angela Burns MS. The CPG provides a platform to inform Members of the Senedd about experiences and issues affecting the community in Wales.

 

Rare Disease Day parliamentary reception

  • An annual event, normally held in February, to celebrate Rare Disease Day and raise awareness of rare diseases amongst parliamentarians in the Senedd.

 

Genomics Cafes

  • Cafes, held in conjunction with Genomics Partnership Wales, are a relaxed, informal opportunity to meet others and find out about new advances in genomic medicine in Wales. They also provide a chance for those affected by rare and genetic conditions and members of the public to come together, network, and access information (such as research participation and involvement opportunities, events and resources) and support.

 

If you are a member of the Rare Disease Patient Network, you will receive updates about all upcoming events. If you would like to join the network, please email: email walesgenepark@cardiff.ac.uk