Last year the Government consulted on a UK Plan for Rare Diseases, which recognised the need for Centres of Excellence.   The UK plan said that Centres of Excellence should have the following characteristics:

  • Coordinated Care
  • Adequate caseload for expertise
  • Not dependent on a single clinician;
  • Arrangements for transition from children’s to adults’ services;
  • Engaged with people with rare conditions;
  • Research active.


Rare Disease UK is conducting a survey to find out what people affected by a rare disease need from Centres of Excellence

If you are living with a rare condition, or you are a carer or have been a carer in the last two years, you can complete the survey here:  

If you are an industry or patient organisation representative, a clinician or academic researcher, you can complete the survey here:

The survey should take no longer than 10 minutes to complete. The closing date is 20th May.