Find out more about rare diseases:
: An annual event on 28th February to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers
: A framework setting out a coherent, national vision on how the UK will improve the lives of those living with rare diseases
: An alliance bringing together patient organisations to campaign for improved care for people living with rare autoimmune rheumatic diseases in the UK
: A not-for-profit life science organisation leading the way for change in rare diseases and supporting promising initiatives in global health
Search for and find out about organisations concerned with rare diseases in the UK from charitable organisations to research groups
: brings together UK rare disease research
Organisations we work with:
For clinicians:
Health Data Resources
: this organisation aims to make the way patient data is used more visible, understandable and trustworthy, for patients, the public and health professionals. They have reported on
: dashboard provides population denominators for the population of England from 2006 onwards, stratified by sex, age and index of multiple deprivation (IMD)