About the #ProtectERNs campaign
On 29 March 2019, the UK is set to leave the European Union (EU). At present the UK Government and the EU have not agreed on a withdrawal procedure that protects the UK’s ability to continue to be involved in ERNs.
Without continued involvement of the UK, the capacity of ERNs will be diminished and networks risk falling short of their ambition to raise standards and equity in rare disease care across the EU.
Genetic Alliance UK has developed a statement, in collaboration with a number of experts working in the rare disease field, on the importance of the UK’s involvement in ERNs. You can view the statement here.
The statement and the #ProtectERNs campaign is calling on the UK Government and the EU to secure the sustained involvement of the UK in ERNs.