Find out more about rare diseases:

Rare diseases day: 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

The UK rare diseases framework: A framework setting out a coherent, national vision on how the UK will improve the lives of those living with rare diseases.

The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA): an alliance bringing together patient organisations to campaign for improved care for people living with rare autoimmune rheumatic diseases in the UK

Organisations we work with:

Health Data Research UK (HDRUK)

National Disease Registration Service (NDRS)

 

For clinicians:

British Society for Rheumatology

Health Data Resources

Understanding Patient Data: 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 Public attidues about patient data

Population denominator web app: dashboard provides population denominators for the population of England from 2006 onwards, stratified by sex, age and index of multiple deprivation (IMD)