Ministry of Health of Ukraine
European Society of Human Genetics
EURORDIS – Rare Diseases Europe
European Reference Networks
Shupyk National Healthcare University of Ukraine
«Okhmatdyt» National Children’s Specialized Hospital of the Ministry of Health of Ukraine (NCSH «Okhmatdyt» MHU)
Ukrainian Association of Specialists in Medical and Laboratory Genetics (UASMLG)
“EXPANDED NEONATAL SCREENING IN UKRAINE:
IMPLEMENTATION OF EUROPEAN AND WORLD EXPERIENCE”
On the occasion of the International Day of Neonatal Screening
June 28, 2022, at 9:00 EEST
PARTICIPATION IS FREE
It has been more than fifty years since newborn screening allows for the first time to detect and begin symptomatic treatment of severe inherited diseases. Thanks to preclinical diagnosis and early intervention in the world today, for example, it is almost impossible to find a patient with a manifest form of classical phenylketonuria. During these fifty years, the development of diagnostic and therapeutic possibilities has made newborn screening a truly revolutionary milestone in the public health system, which has reduced infant disability and mortality. In recognition of this, the international community annually, on June 28, the birthday of the “father” of newborn screening, Robert Guthrie, celebrates the International Day of Newborn Screening.
That is why, on June 28, 2022, for the first time in Ukraine, an international conference on newborn screening will be held. On this day, Ukraine will become not only a European but also a global center for discussing new progressive ideas and breakthroughs in the field of presymptomatic diagnosis and treatment of rare diseases.
This event is especially important because in 2021 the Ministry of Health of Ukraine together with the Association of Medical and Laboratory Genetics Specialists (VASMLG) developed a project and prepared the basis for the implementation of a new system of expanded newborn screening, which includes detection of 21 rare diseases. This project was supported by the top leadership of our state. The national program had to start on June 1, 2022. Unfortunately, the terrible war that Russia has started against our country has interfered in the implementation of this system but has not stopped it.
We are very grateful to key European organizations – the European Society of Human Genetics (ESHG) and the European Organization for Rare Diseases (EURORDIS – Rare Diseases Europe), as well as leading scientists and clinicians from many countries who kindly agreed to support our conference and share their knowledge. and experience in the organization and effective functioning of newborn screening.
Despite the fact that registration for a conference of this level is usually paid, this year’s organizers found an opportunity to hold it free of charge.
The conference will be held online.
The language of the conference is Ukrainian, and
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