Okhmatdyt Hospital and St. Nicholas Church in Kyiv will be illuminated to remind people of Ukrainians’ fight against rare diseases

75% of Ukrainians with rare diseases remain in Ukraine despite the war, while 25% are abroad. On International Rare Disease Day, observed in the last days of February, Kyiv will host a discussion on supporting orphan patients and on finding ways to create conditions for the support and treatment of patients with rare diseases that are equal to European ones amid the full-scale war.
On Tuesday, February 27, Kyiv will host a panel discussion with the participation of 40 experts. The discussion will bring together representatives of Eurordis, the European Parliament and the ERN, European doctors and patient communities, representatives of the Ukrainian government, the Ministry of Health, the National Health Service of Ukraine (NHSU), the State Enterprise “Medical Procurement of Ukraine”, representatives of regional health care departments and administrations, representatives of manufacturers of innovative medicines, physician experts in orphan disease fields, and representatives of civil society organizations.
The discussion will be streamed online in two languages: Ukrainian and English.
Venue: Hyatt Regency (Kyiv, 5 Alla Tarasova Street).

Moderators of the event: Olena Filiniuk (SAFEMed) and Tetiana Kulesha (NGO “Orphan Diseases of Ukraine”).
The discussion starts at 10:00

“We understand that in the conditions of a major war it is hard to talk about supporting particular groups of the population. But in Ukraine there are orphan patients who are fighting, there are patients who volunteer, and there are patients’ relatives who volunteer or have gone to the front. Orphan patients are forced to live in conditions of a double war: for the life of the country and for their own,” says Tetiana Kulesha, head of the NGO “Orphan Diseases of Ukraine.” “Moreover, patients who are abroad now began receiving therapy there, and they will not return home, where there is no such treatment.”
The public discussion is expected to touch on issues such as:
• priorities of state policy on providing Ukrainian orphan patients with treatment,
• the possibility of receiving assistance through NHSU packages,
• introduction of mobile palliative care,
• access to the latest medicines and types of therapy,
• European experience useful for Ukrainian orphan centers and for orphan-disease doctors, and many other issues.
At the end of the day, at 18:00, colored illumination will be switched on at two landmark buildings in Kyiv, the National Specialized Children’s Hospital “Okhmatdyt” and St. Nicholas Church, which has already become a tradition of marking Rare Disease Day. In this way the organizers want to remind a wide audience of the need for treatment and support for orphan patients.