A round-table conference devoted to the problems of children with orphan (rare) diseases took place in the conference hall of the International Charitable Foundation “Alexander Feldman Foundation” on February 28. The representatives of seven NGOs, which unite parents of children with phenylketonuria, mucopolysaccharidoses, Duchenne/Becker muscular dystrophy, acromegaly, Gaucher’s disease, epidermolysis bullosa and other diseases, took part in it. Within the framework of the event, a flash exhibition “Rare but not single” was opened in the atrium of the AVEC Gallery.
“The events like this one take place in five cities of Ukraine – Kyiv, Kharkiv, Lviv, Odesa and Dnipro. Their goal is to inform the representatives of authorities, officials, doctors and other decision-makers, as well as the public that without their support and joint efforts, it is just impossible for people with rare diseases to survive,” the head of the Ukrainian Union of Children with Phenylketonuria ‘Special Children’, the member of Public Union “Rare Diseases of Ukraine” Volodymyr Tutuk told. “No one indeed prepares to become a parent of a child with rare disease, it is impossible to warn ourselves against this, and each person takes this news in his or her own way. And the shock is followed with understanding, that it is necessary to continue living and to fight for life. Every day is a gift, every achievement is a victory over ourselves. This is exactly what we – the parents of children with rare diseases and these children – are trying to tell everyone around with the help of these round-table conferences, exhibitions, press-conferences.”
It should be noted that on the initiative of the European Organization for Rare Diseases (EURORDIS), the rarest day of the year – February 29 – is now officially the Rare Disease Day. On non-leap years, it is marked on February 28. According to the experts, there are nearly 5,000-7,000 life-threatening rare diseases in the world. Nearly 80 percent of them are genetic.
