“We offer today to start developing a special program for the medication of children with orphan diseases, taking into account the problems that have already been identified at this point,” she said at the opening of the exhibition “Rare fate. Life and hope”, which is dedicated to the International day of rare diseases.
centralized procurement of medicines will help patients with rare diseases
commissioners, according to Kuznetsova, will consistently pursue the appropriate action.
Russia is home To more than 30 million minors, about 8 thousand of them – with orphan diseases. The children’s Ombudsman stressed the need for the federalization of rare diseases. This will allow you to Fund costly drugs at the expense of the state budget.
Another important step was the centralization of procurement procedures. “There is already a bill drafted by the Finance Ministry, which will help reduce the cost of the drug in the joint procurement,” – says Anna Kuznetsova.
Separately, the children’s Ombudsman touched on the topic of the assignment in children with phenylketonuria disability until they reach 18 years of age, while it is only up to 14.