The voice of rare disease patients in Europe, EURORDIS, is supporting the Genetic Alliance UK‘s #ProtectERNs campaign that calls on the UK government and the EU to secure the sustained involvement of the UK in European Reference Networks (ERNs) post Brexit.
ERNs connect patients, clinicians and researchers, allowing knowledge and expertise on rare diseases to be shared across Europe and in turn provide patients with access to diagnosis and transformative care without the burden of long-distance travel. Read the many case studies setting out why UK participation in the ERNs is vital for people living with a rare disease. As proud members of Eurordis, we are asking you to support the campaign by adding your online signature to the campaign.
Trustee and Chair