European Reference Networks (ERNs) are the structures that provide for this collaboration, linking approximately 20,000 healthcare professionals in 300 centres of excellence, across 26 countries. ERNs are already delivering benefit to almost a million rare disease patients ― and their future potential is enormous.
The NHS provides leadership for a quarter of the 24 topic specific ERNs – and is involved in all but one. That’s 40 UK centres of excellence, and 114 specialist units, caring for approximately 150,000 rare disease patients in the UK.
Losing our ability to collaborate and lead as a consequence of Brexit would be to the profound disadvantage of rare disease patients and families in the UK and across the EU.
This is why Genetic Alliance UK is calling upon the European Commission and the members of the EU to work with the UK Government to secure sustained involvement of the UK.
We must protect the lives and wellbeing of rare disease patients and their families. It would be all too easy for their interests to be lost or marginalised during the course of negotiations. We must not allow this to happen.