The majority of Ukrainian orphan patients did not evacuate and remained in Ukraine, but there is no official data, the European Organization for Rare Diseases EURORDIS reported.
“There is no official data on the number of people with rare diseases who left the country. According to unofficial data and feedback from patient organizations, most people remained in Ukraine because they need additional support to leave the country, as well as the help of humanitarian organizations that can contribute to medical evacuation,” the organization told Interfax-Ukraine.
EURORDIS noted that the EU has a developed network of medical institutions specializing in rare diseases that accept patients from Ukraine. At the same time, patients remaining in Ukraine do not have the opportunity to go to such centers without additional assistance.
EURORDIS reported that in all EU countries, Ukrainians are given the same access to medical care as citizens of the country in which they are. At the same time, for many patients with orphan diseases in European countries, there are different methods of treatment than those used in Ukraine, which help to cope with symptoms, prolong life or prevent deterioration.
“In many cases, people living with rare diseases in Ukraine are treated with drugs other than those in an EU country. In such cases, the EU will work with families to identify the most appropriate substitutes. However, this means that a patient with a rare disease it is necessary to contact a specialized center,” emphasizes EURORDIS.
As reported, Airbnb provides patients with rare (orphan) diseases leaving Ukraine with free housing for a period of a month. The project is being implemented as part of a partnership with Airbnb, which is implementing a larger Airbnb.org program to provide housing for 100,000 refugees leaving Ukraine. At the same time, EURORDIS collects information on the situation of migrants with orphan diseases and their needs for short-term housing. Based on this information, Airbnb.org, after reviewing the request, will issue a voucher for booking accommodation through its platform.
The European Organization for Rare Diseases EURORDIS brings together almost 1000 patient organizations in 74 countries.
In Ukraine, there are about 2 million people living with rare diseases (such as spinal muscular atrophy).
