Helping Ukraine To Build Back Better For Rare Diseases Eurordis

Helping Ukraine To Build Back Better For Rare Diseases Eurordis The war has imperilled the progress the country has been making and many organisations have an important role to play to help. in ukraine, when faced with destruction, people often say: ‘we will build back better.’ and so, we all have a role to play to help ukraine to build back better for rare diseases. Across europe, eurordis plays a key role in raising attention to and catalysing support for the 30 million people living with a rare disease. today, ukraine is under siege, and it is our shared responsibility to ensure that no person living with a rare disease, whose conditions are often debilitating or need frequent and complex medical attention, is left behind.

Report On Rare Diseases A Clinical Perspective Eurordis Contact eurordis members in ukraine. rare diseases hub ukraine based at the national children’s hospital okhmatdyt in kyiv is the virtual coordination center which connects patients with rare diseases from ukraine with organizations and hospitals that are members of the european reference network (ern) in order to provide the specialized. A rare barometer survey of patients living with a rare disease in ukraine received more than 400 responses from april to june 2022. it indicated that some 60% of ukrainians living with a rare disease stayed in the same place in ukraine, 13% moved within ukraine, and approximately 25% moved out of ukraine. The urgent need regarding people with a rare disease in ukraine is for help to get vulnerable families safely out of the country and help to get essential medicines and supplies in. there are an estimated 2 million people in ukraine living with a rare disease. there are >6,000 rare diseases. Paris, france. 33 1 56.53.52.10. [email protected]. eurordis.org. 2024 member. about eurordis rare diseases europe. eurordis rare diseases europe is a unique, non profit alliance of over 1000 rare disease patient organizations from 74 countries that work together to improve the lives of over 300 million people living with a.