Patients and Families

We engage with patients and their families, bringing their priorities to the fore in genetic research, health policy and service development.

Public and professional networking at the Rare Disease day at Senedd.

Public and professional networking at the Rare Disease day at Senedd.

Advances in genetic research impact on us all. Raising awareness, consulting with the public and representing the views of those with genetic conditions is fundamental to the vision of the Wales Gene Park.

 

Genetics is at the forefront of science and often pushes the boundaries of current knowledge in order to improve diagnosis and treatment. We work in partnership with patient organisations to inform debate about the ethical and societal implications of scientific and healthcare research.

Our Team

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.

Policy and health service development

Rare Disease Day Reception at the Senedd.

Alan Thomas, the Chair of Ataxia UK’s South Wales branch, speaking at the Rare Disease Day Reception at the Senedd.

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.

Previous campaigns include work with the Wales Neurological Alliance (WNA) and a Wales-wide service for diagnosing Familial Hypercholesterolemia. Working in partnership with colleagues from Genetic Alliance UK ensures that the views of patient organisations in Wales are also recognised at UK government level.

Contact us

  1. Wales Gene Park
  2. Institute of Medical Genetics
  3. Heath Park
  4. Cardiff
  5. CF14 4XN

For enquiries, please contact the Development Officer Emma Hughes:
emma@geneticalliance.org.uk