We are very concerned about the situation in the financing of orphan nosology and it must be corrected immediately.
I wonder who so cynically decided to reduce the funding of orphan nosology and as a result to cut people’s lives?

At these two photos are two completely different girls. One of them is Lina, she is 7 years old. Lina is a creative kid who loves to draw, play chess and do oriental dancing. In the second photo there is Olga, she is 21 years old. Olya dreams of traveling, having a large family and helping people. Olga wants to work as a psychologist with “difficult” teenagers.

These two girls are united by two things: they have a rare disease – juvenile rheumatoid arthritis (JRA).
And yet, the lives of both are at risk since next year. After all, in the draft budget for 2020, programs for the purchase of vital medicines have been halved. Someone’s unknown hand cut funding for all rare diseases, and so Lina and Olga with Jurassic disease, and also Vitali with hemophilia, Natalka with cystic fibrosis, Elena with primary immunodeficiency, Andrew with pulmonary arterial hypertension and many other children and adults are left without medicines from state.

And this is a great tragedy for many patients, because the treatment for such patients costs a lot of money. No one  can buy them. Moreover, medicines for patients with hemophilia  are not sold at the pharmacy at all. Thus such patients will stay face-to-face with death. I have already received requests from patient groups to help keep funding for these  programs at least at the level of previous years.