The Rare Disease Quality Standard Project aims to produce a set of quality statements for rare disease, which will be used by relevant authorities across the four nations as the basis for a quality standard for rare disease. They currently need our help!
Information about the Rare Disease Quality Standard Project:
Their goals:
They want to establish, through collaboration across the rare disease community, a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases.
What will the results look like?
They will develop a clear set of statements, which will be used by relevant authorities (e.g. the National Institute for Health and Care Excellence – NICE), to drive improvements in rare disease care and treatment. These statements will be developed from the experiences and input of patients, carers, healthcare professionals, policymakers and patient organisations, to ensure that they best reflect the needs of the community, and the most effective solutions to some of the issues this community faces.
How can you support them?
Please complete the survey, and share it with your networks.