On 29 March 2019, the UK is set to leave the European Union (EU). Nevertheless, there is still a lack of agreement among the UK Government and the EU on the withdrawal procedure to be followed regarding the continuity of UK Healthcare providers involved in the ERNs. In order to highlight the importance of UK's involvement in ERNs, Genetic Alliance UK has developed a statement in collaboration with a number of experts working in the rare disease field. In this context, the #ProtectERNs campaign is calling on the UK Government and the EU to ensure the sustained involvement of the UK in ERNs.
Maria Piggin, ERN-EuroBloodNet ePAGs for the Paroxysmal nocturnal hemoglobinuria (PNH) and Chair of PNH Support, and Sophie Wintrich, ERN-EuroBloodNet ePAGs for Myelodysplastic syndromes (MDS) and CEO of MDS UK, both based in London, have provided in a blog written for the Protect ERNs website four examples of ways that rare disease communities in the UK stand to lose if the UK is prevented from continuing to collaborate in ERNs.