To commemorate World Rare Disease Day, this one-day hybrid (in person + online) conference will feature a panel discussion “DOUBLE WAR: Ukraine’s European vector in providing treatment and support for people living with a rare disease in the context of a full-scale war”.
Representatives Representatives of EURORDIS-Rare Diseases Europe, the European Parliament, the European Reference Networks (ERNs), doctors from the expert centres on rare diseases from Ukraine and ERNs, patient communities, representatives of the Ukrainian authorities, the Ministry of Health of Ukraine, the National Health Service of Ukraine, the “Medical Procurement of Ukraine”, and many others have been invited to participate in the event.
The main topics of discussion: supporting and treatment of Ukrainian patients with rare diseases in Ukraine and other Europe countries during the war; State policy of Ukraine; access to innovative therapies; development of a network of expert centres on rare diseases in Ukraine based on the European model, connecting the Orphanet system to the Ukrainian eHealth system.
Language: Ukrainian with English translation.
Time: 9.30 – 17.30 UTC/GMT+2 time zone
