We engage with patients and their families, bringing their priorities to the fore in genetic research, health policy and service development.
What we do
Wales Gene Park engages with charities, support groups and other voluntary bodies and helps to bring their priorities to researchers, policy-makers and those who develop and deliver services.
Patient and Public Involvement
Wales Gene Park works with patients and the public to involve them in rare disease and genetic research. In addition to representation on our governance boards, patient and public involvement (PPI) is key to our work across all programmes including health professional education and engagement, research and policy development.
Opportunities to be involved in our work
Rare Disease Patient Network
Join our Rare Disease Patient Network. Free of charge, the network is open to patients, carers and family members but also includes health professionals, researchers and others with an interest in rare diseases.
We hold an annual event in autumn to bring together stakeholders from across the community as well as a parliamentary reception at the Senedd in February to celebrate Rare Disease Day. These opportunities provide guidance and inform the work that we do at Wales Gene Park.
We are keen to hear from patients and carers who would like to share their experience of being affected by a rare disease so please get in touch if you would like to be considered for an opportunity to do this firstname.lastname@example.org
Patient Rare Disease Research Portal
Become a member of our Research Portal Development Group. The group is working to develop the Portal which will:
- Promote Health and Care Research Wales studies and rare disease projects from other researchers
- Link to training opportunities via the Health and Care Research Wales training programme
Design and development is complete, and usability testing with patients and the public is planned before its launch. To become involved please contact email@example.com
The Rare Resources Project
In collaboration with Genetic Alliance UK, the project aims to develop an information toolkit for parents of children with rare or undiagnosed genetic conditions and will include information about involvement and participation in relevant research.
An initial workshop was held with parents, with further events planned over the coming months. In partnership with our Rare Disease Network, the toolkit will be distributed to relevant stakeholders including health professionals.
If you would like to be involved in one of our workshops, please contact firstname.lastname@example.org
Policy and health service development
Our current focus in Wales involves representing stakeholders’ interests in campaigning with Rare Disease UK (RDUK) for a UK strategy to ensure that patients and families living with rare disease have equitable access to effective services.
As a member of the Programme Board for the Genomics for Precision Medicine Strategy, we provide oversight from the patient perspective and are supporting the involvement of patient and public members through the establishment of a Patient Sounding Board.
For more information on the work that we do, please contact Emma Hughes, Policy & Engagement Manager for Genetic Alliance UK in Wales: email@example.com