Information platform of children orphan diseases treatment is being developed in Russia


The institute of Ombudsmen for Children develops the uniform platform included information aimed to help families at treatment of children with rare diseases, TASS with reference to the Comissioner for the President of Russia by the rights of the child Anna Kuznetsova who reported about it during a greeting at the All-Russian forum on orphan diseases reports.

“The Children’s Ombudsman announced the creation of a single information platform, which will include all the necessary information – social, legal, charitable – all that the family may need while receiving treatment and building the right route”, Kuznetsova press service reports. The platform is being developed by the Institute of Commissioners for the Rights of the Child with interested public organizations, with the participation of specialists and experts, with the support of the all-Russian public organization “Business Russia.”

This solution will improve the coordination of all actors involved in the process of providing assistance to the child and will prevent parents from unnecessary time and effort to find the necessary information. According to the ombudsman, parents “report a total lack of information in the event of a child’s detection of a disease: where to go for help, what treatment options are in the region, what the state can help and many other issues.”

The Children’s Ombudsman called for expanding the current system of early diagnosis of orphan diseases to make recommendations on “orphan wariness.” The Ombudsman also considers it important to expand the list of diseases that will cover the activities of the Circle of Good Foundation, which supports children with serious life-threatening and chronic diseases.