Meeting of the Parliament 15 November 2018
The draft agreement appears to offer no guarantees on the future ability of the UK to be involved in European reference networks, which allow knowledge and expertise about rare diseases, and work on treatment and cures, to be shared across Europe. I appreciate that the cabinet secretary is wrestling with many issues, but will he offer his support for the Genetic Alliance campaign to protect involvement in ERNs and will he undertake to raise the matter with the UK Government, given that, for many people, this could literally be a matter of life or death?