EURORDIS presents strategy to meet needs of Ukrainian RD community
In light of the current humanitarian crisis in Ukraine, EURORDIS has published a press release to review the situation of the rare disease patient community in the country and to announce its response and the services it is providing to rare disease patients. EURORDIS recalls that the rare disease community is facing great challenges in Ukraine, as patients are unable to access specialised treatment and care, notably due to internal displacement induced by the fighting. EURORDIS thus calls for greater international collaboration to provide medicines and medical devices to patients in Ukraine and to expedite the export of relief supplies and rare disease medicines into the country.
EURORDIS also calls for the implementation of fast tracks on both sides of the borders to ensure that vulnerable people, including rare disease patients, can avoid long waiting times and reach another country safely. EURORDIS’ statement highlights that children with a rare disease need to leave the country accompanied by both their parents, who are also their caregivers, and that this needs to be ensured at the borders. European and international support for countries welcoming the most Ukrainian refugees should be increased, while Member States and expert centres need to anticipate and facilitate the arrival of Ukrainian displaced persons across the Union.
EURORDIS has set up an internal taskforce dedicated to Ukraine (ukraine@eurordis.org) and disseminated a statement to raise awareness on the situation of the rare disease community in the country. EURORDIS has also set up an online resource centre for patients and patient organisations informing about aservices available for rare disease patients in neighbouring countries.
Orphanet has also published, and will maintain, a list of rare disease resources useful for refugees and displaced persons.
