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
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)