75% of Ukrainians with rare diseases remain in Ukraine despite the war, while 25% are abroad. On the International Day of Rare Diseases, which is celebrated in the last days of February, Kiev will talk about support for orphan patients and look for a solution on how to create equal European conditions of support and treatment for patients with rare diseases in conditions of full-scale war.
On Tuesday, February 27, Kiev will host a panel discussion with 40 experts. The discussion will be attended by representatives of Eurordis, European Parliament, ERN, European doctors and patient communities, representatives of the Ukrainian authorities, Ministry of Health, NHSU, State Enterprise “Medical Procurement of Ukraine”, representatives of health departments and administrations from the regions, representatives of manufacturers of innovative medicines, expert doctors in orthopaedic areas and representatives of public organizations.
The discussion will be webcast in two languages: Ukrainian and English.
Venue: Hyatt Regency (5 Alla Tarasova Street, Kyiv).
Moderators of the event: Elena Filinyuk (SAFEMed) and Tetyana Kulesha (OS “Orphan diseases of Ukraine”).
The discussion will start at 10:00
“We realize that in the conditions of a big war it is difficult to talk about support for certain groups of the population. But in Ukraine there are orthane patients who are fighting, there are patients who are volunteering, there are relatives of patients who are volunteering or have gone to the front. Orphan patients have to live in a double war: for the life of the country, and for their own, – says the chairman of the OS “Orphan diseases of Ukraine” Tetyana Kulesha, – In addition, patients who are now abroad, started to receive therapy there, they will not return home, where there is no such treatment”.
During the public discussion they plan to touch upon such issues as:
– priorities of the state policy on providing Ukrainian orphan patients with treatment,
– the possibility to receive care through NHS packages,
– introduction of mobile palliative care,
– access to the latest medicines and therapies,
– European experience useful for Ukrainian orphan centers, for orphan doctors and many other issues.
At the end of the day at 18:00 two landmark buildings in Kiev – Okhmatdet NDSB and St. Nicholas Church – will be illuminated with colored lights, which has already become a tradition of Rare Diseases Day celebrations. In this way, the organizers want to remind a wide range of people about the need for treatment and support for orphan patients.
