Representatives of the Charity Fundation “Sister Dalila” took part in a membership meeting of the European Alliance of Rare Diseases – EURORDIS Membership Meeting 2019 # EMM2019 in Bucharest, Romania on May 17-18.
On the first day, there was held a EURORDIS general assembly, where reports on activities and plans for the next year were presented. Eurodris is an organization that mostly implements projects with financial support from the EU and, accordingly, for EU member states, or in their territory. Unfortunately, as long as Ukraine is not a member of the EU, there are few options available to us, and the associated membership did not give much. Of course, we are grateful for a visa-free travel)
Eurorodis sets ambitious goals in Europe to provide patients with rare diseases with complete care by 2030. This is an effective, timely and highly qualified assistance, impartiality in access to treatment, education, recreation, psychological support and all aspects of social inclusion, ensuring equal rights.
In today’s realities, Ukraine has many barriers. Eurorodis membership is mportant  for us, because it is an opportunity not only to talk about the problems of orphan patients in Ukraine, but also to find the instruments of influence and new experience.