A round table discussion devoted to the problem of children with rare diseases took place in the office of AVEC Concern (70, Sumska Str.) on Saturday, March 4. The parents of children with phenylketonuria, the members of the NGO “Special children,” the representatives of Feldman Ecopark and the International Charitable Foundation “Oleksandr Feldman Foundation” took part in it. During the meeting, the issues of legal and psychological assistance, the directions of cooperation between organizations were discussed. In particular, the participants reached an agreement about the individual consultations and educational seminars, which will be carried out by the lawyers of the Public reception office of Ukrainian MP Oleksandr Feldman. They will help parents of children suffering from rare diseases to more efficiently protect their interests in the issues of social benefits, medical services, labour relations, etc. Moreover, the specialists of the Feldman Ecopark Centre of Psychosocial Rehabilitation, who have a big experience of work with different categories of children and teenagers, expressed their readiness to develop an exclusive programme for ‘special children.’ Its implementation will start this summer in the territory of the Regional Landscape Park Feldman Ecopark.
“Our organization, which functions for already a year since March 3, 2016, consists of more than 300 persons. It is not only the residents of Kharkiv, but the residents of other Ukrainian cities. We are united by one trouble and a common wish to win – we are the parents of children with the diagnosis of phenylketonuria,” the president of the NGO “Special children” Volodymyr Tutuk told. “It is a rare genetic disease connected with the metabolic disorder. It is not a verdict, but a serious trial: the restrictions, first of all, in the diet connected with this disease cause many obstacles, which complicate our children’s and our life. In order to overcome them, and to fight down the indifference of officials and the lack of understanding from the society, we need assistance of the organization with great professional experience. The International Charitable Foundation of Oleksandr Feldman and Feldman Ecopark became such partners for us.”
While the adults solved serious issues, the kids spent time cheerfully in the company of entertainers from Feldman Ecopark. The round table discussion ended with the real holiday, as it was adorned with the dietetic treats and the special cake cooked specially for the first anniversary of the organization “Special Children.”
