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 \u201cSpecial children,\u201d the representatives of Feldman Ecopark and the International Charitable Foundation \u201cOleksandr Feldman Foundation\u201d 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 \u2018special children.\u2019 Its implementation will start this summer in the territory of the Regional Landscape Park Feldman Ecopark.<\/p>\n
\u201cOur 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 \u2013 we are the parents of children with the diagnosis of phenylketonuria,\u201d the president of the NGO \u201cSpecial children\u201d Volodymyr Tutuk told. \u201cIt 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\u2019s 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.\u201d<\/p>\n
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 \u201cSpecial Children.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"