VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
With the UK set to leave the European Union (EU) on March 29th 2019 (followed by a proposed 2 year transitional period), much is still unclear when it comes to the future participation of the UK in the European Reference Networks on rare diseases.
Genetic Alliance UK has developed a statement, in collaboration with a number of experts from the rare disease community, and launched the #ProtectERNs campaign which calls on the EU and the UK Government to secure the sustained involvement of the UK in ERNs for the benefit of patients in both Europe and the UK. You can read the full statement here.
In VASCERN alone we have 4 Healthcare Providers (HCPs) from the UK and we do not want to lose the dedicated experts from these expert centers. Four out of five of our Rare Disease Working Groups (RDWGs) include Healthcare Providers members from the UK and three RDWG’s (HHT-WG, MSA-WG and PPL-WG) are chaired or co-chaired by British healthcare professionals. We hope that both the UK Government and the European Union choose to invest in the future of ERNs and find a way to continue the current collaboration between our rare disease experts.
If you would like to support this campaign, you can sign your name here!