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Both sides of the NHS
Patient experience
Too rare to name
Patient experience
We are the national campaign for people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.
Anyone with an interest in rare diseases can become a supporter of Rare Disease UK. It is completely free to join for everyone other than industry.
Join us Get in touchWe believe that everyone living with a rare disease should be able to receive high quality services, treatment and support. We work with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.
