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.