Healthcare in the UK is a devolved matter, which means that England, Scotland, Wales and Northern Ireland each have their own system of healthcare which is funded by and accountable to their own governments and parliaments.
Genetic Alliance UK has dedicated roles in Scotland and Wales to support our work improving the lives of people living with genetic and rare conditions in these nations. In Northern Ireland we work with our sister organisation, the Northern Ireland Rare Disease Partnership.
Our work in Scotland
We work closely with the Scottish Government and NHS Scotland to ensure the voice of people living with rare, genetic and undiagnosed conditions is at the centre of decision making and service planning.
The impact that we have in Scotland includes our dedicated policy and engagement manager in Scotland developing the Scotland Virtual Involvement Network – a group of patients, carers and advocates in Scotland who input and support our work to influence and improve access to information, treatments and research.
Genetic Alliance UK are members of the Scottish Rare Disease Implementation Board (RDIB) which is responsible for the development and delivery of the UK Rare Diseases Framework in Scotland. Our policy and engagement manager for Scotland works closely with the RDIB and the Scottish Government’s Rare Disease Team to deliver community events to inform the delivery of the Scottish Rare Disease Action Plan.
Our policy and engagement manager for Scotland also supports the work of the Scottish Strategic Network for Genomic Medicine and is a co-chair of the Strategic Network’s Patient Involvement Advisory Group. We also contribute the voices of people living with genetic and rare conditions to work in Scotland by the Congenital Anomalies and Rare Diseases Registration and Information Service for Scotland Expert Advisory Panel, National Patient, Public and Professional Involvement Group, and Office for Rare Conditions (Glasgow) Steering Group.
We provide the Secretariat for the Cross Party Group on Rare, Genetic and Undiagnosed Conditions in the Scottish Parliament. Our policy and engagement manager for Scotland is also responsible for delivering our public affairs work in Scotland, including delivering and attending parliamentary events and holding parliamentary exhibitions to raise awareness of rare, genetic and undiagnosed conditions.
To find out more about our work in Scotland, contact Natalie Frankish (Policy and Engagement Manager for Scotland): [email protected].
Our work in Wales
In Wales, Genetic Alliance UK collaborates closely with Wales Gene Park, an initiative that supports genetic and genomic healthcare research and its integration into NHS services in Wales. Wales Gene Park’s policy and engagement manager role proudly works in collaboration with Genetic Alliance UK.
Wales Gene Park is one of the partner organisations within Genomics Partnership Wales, a network of organisations responsible for delivering the Welsh Government’s Genomics Delivery Plan. It is co-located with the All Wales Medical Genomics Service which enables a close working relationship with the clinical and laboratory services as well as supporting the delivery of genomics education and engagement to health professionals, schools and colleges, patients and the public.
Thanks to direct collaboration with Genetic Alliance UK, Wales Gene Park has developed a network of patients, carers, advocates and professionals in Wales who input and support work to influence and improve access to information, services, treatments and research.
The current focus of this network at Wales Gene Park involves representing the interests of the genetic, rare and undiagnosed community in the development and implementation of the UK Rare Diseases Framework. The network also ensures that the Welsh Government implements and evaluates an appropriate action plan to deliver these priorities. The plan must ensure that people living with rare diseases have equitable access to effective testing, services, treatment and research opportunities. Genetic Alliance UK sits on the oversight group responsible for delivery of the Welsh plan.
Another area of our major influence in Wales is as a member of the programme board for the Genomics Delivery Plan in Wales. Genetic Alliance UK provides oversight from the perspective of people living with genetic conditions and supports the involvement of patient and public members through the Patient and Public Sounding Board.
Genetic Alliance UK established the Cross-Party Group for Rare, Genetic and Undiagnosed Conditions, providing a platform to inform Members of the Senedd about key issues affecting the rare, genetic and undiagnosed community. Genetic Alliance UK also collaborates locally with organisations to deliver parliamentary drop-in sessions for Members, with recent sessions focusing on genomics and newborn screening.
To find out more about our work in Wales, contact Emma Hughes (Policy and Engagement Manager for Wales) [email protected].
In Northern Ireland we work with our sister organisation, the Northern Ireland Rare Disease Partnership. NIRDP brings together those living with a genetic, rare or undiagnosed disease and organisations representing them, as well as all professionals such as those in healthcare, researchers, health policymakers and academics.
NIRDP works with people in the community as well as all other stakeholders to find practical ways of improving the quality of life, treatment and care for those with genetic, rare and undiagnosed conditions in Northern Ireland.
To achieve their aims, NIRDP works closely with the Northern Ireland Department of Health, the Health and Social Care Board, Public Health Agency and the Patient Client Council, and with patient representative organisations in the UK including Genetic Alliance UK. NIRDP also works across wider borders with the Republic of Ireland (IPPOSI, MRCG and GRDO) and Europe (EURORDIS), as well as with a wide range of condition-specific groups and organisations.
NIRDP wants to increase their network of interested organisations and people. You can contact NIRDP by emailing [email protected].