Genetic Alliance UK in Wales:
Welcome to the Welsh Genetic Alliance UK Homepage!
Devolution in the United Kingdom means that healthcare services and policies for Wales are the responsibility of the Welsh Assembly Government.
Genetic Alliance UK is very active in Wales with a dedicated post. This allows the organisation to be familiar with the local networks and organisations and with the knowledge and ability to be responsive to changes. It also allows Genetic Alliance UK to become involved in local initiatives and programmes whilst still benefitting from resources and expertise by being a part of the UK-level team.
In Wales, Genetic Alliance UK works in partnership with many organisations, particularly the Wales Gene Park. This is a network of professionals in clinical, academic and educational disciplines with and interest in Medical Genetics, primarily based in Cardiff University but also includesthe University of Glamorgan and Swansea University.
Genetic Alliance UK in Wales has three key areas of work, they are described below. Implicit to these areas are involving individuals and families affected with genetic conditions on the various projects and informing them of any relevant developments. Click on the links to take you to the web pages relevant to the subjects for more information.
Policy and health service development. Genetic Alliance UK is involved in several different campaigns to introduce and improve health services in Wales for various genetic conditions.
Our current focus in Wales includes working with stakeholders to represent Welsh interests in campaigning with Rare Disease UK (RDUK) for a UK strategy to ensure that patients and families living with rare diseases have equitable access to effective services. Rare Disease UK’s report ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’ outlines the current situation for people living with, or working in the field of, rare diseases in the UK and the actions that are needed to improve on this.
Our previous campaigns have included working within the Wales Neurological Alliance to develop and improve neuroscience services - including services for neurogenetic and neuromuscular conditions - and introducing a Wales-wide service for diagnosing Familial Hypercholesterolaemia (inherited high cholesterol) following an active public affairs campaign.
Education and public engagement. Genetic Alliance UK has successfully developed several educational and public engagement initiatives and has worked in partnership with other organisations for many of these. They include a Wellcome Trust funded theatre in education project to young people (14-18 years old) about genetics and mental health: Boy Genius and a pilot project: Living with a Genetic Condition, involving people affected by genetic conditions with children and young people in schools within their local community.
Genetic Alliance UK has also been actively involved in health professional education initiatives. These include Telling Stories, Understanding Real Life Genetics, a website full of stories and personal experiences of people affected by genetic conditions developed specifically to help train the nursing professions. Genetic Alliance UK also takes several teaching sessions with the students on the MSc in Genetic Counselling. Topics covered include the value of voluntary organisations in relation to direct support for individuals, families and carers; advocacy; campaigning and lobbying.
Contributing to research and independent projects related to genetics. These disciplines include basic and translational research for the natural and social sciences and the humanities. Projects include organisations involved in UK genetics policy and a systematic review in communicating risk in clinical genetics by Cardiff University.
Genetic Alliance UK has a full-time position in Wales. Emma is Genetic Alliance UK's Development Officer for Wales.
If you would like more information or to get involved in Genetic Alliance UK's work in Wales, please contact our development officer