Useful Information and Websites:

ALISS
Children and Young People’s Commissioner Scotland
EACH
European Reference Networks (ERN)
EURORDIS
Genetic Alliance UK
Health and Social Care Alliance Scotland
Scottish Genomes Partnership (SGP)
SWAN UK

Care Summary – developed by the Patient Advisory Group this brief summary of care is available for all to use.  It may be of help when presenting to a new clinical service or Accident & Emergency.

The Office for Rare Conditions works closely with a number of projects here in the UK and internationally.  for example, the international arm of the Office co-ordinates  EuRRECa, a European project that is developing a core registry for all rare endocrine conditions in Endo-ERN and a further two international registries (I-DSD and I-CAH) which support research in rare conditions affecting sex development. 

Found a site/publication/social media site that you found useful? Then contact us and let us know; we can check it out and possibly add it to the list.