Links to external resources that may be helpful including patient information, public involvement and clinical content.
SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.
Rare Disease UK is the national campaign for people with rare diseases and all who support them. Rare Disease UK provides a united voice for the rare disease community by capturing the experiences of patients and families.
Genetic Alliance UK are the national charity working to improve the lives of patients and families affected by genetic, rare and undiagnosed conditions. They are an alliance of over 200 patient organisations.
Macmillan Cancer Support is the UK’s leading source of cancer support, helping more and more people living with cancer, all with your help.
Public and Patient Involvement
A coordinated Patient and Public Involvement (PPI) Strategy for the North East and Yorkshire Genomic Medicine Service (NE&Y GMS) is being developed, building on the experience of the 100,000 Genomes project with both the clinical and laboratory aspects of service.
The NE&Y GMS is committed to ensuring that public and patient voices are at the heart of shaping our healthcare services. By “patients and public voice (PPV) partners” we mean to include service users, carers and relatives of patients, and the general public.
Public and patient voices will be embedded into our commissioning processes in a range of ways, including gathering insight and feedback to shape services, embedding voices in the governance frameworks of our programmes, working with patients and the public to jointly design and develop services.