September 17 was held in Ukraine as the “Patient Safety Day” proclaimed by President of Ukraine Mr. Volodymyr Zelensky.
On this day, patients with rare diseases, patient organizations, came under the walls of the Office of the President of Ukraine to address the daily need for medicines, without which everyone is at risk of death. It is a lifelong, expensive treatment.
We want to be safe in our State, under the care of the President of Ukraine.
Moreover, as it became known, in the draft budget requests of the Ministry of Health of Ukraine for 2020, the funding of rare (orphan) diseases has been halved. Although it is known about laying additional for “health care” – 9 billion UAH. for 2020
Our activities continued on September 17 under the walls of the Ministry of Health of Ukraine, where we were advised by the Minister of Health of Ukraine Zoryana Skaletska – Dmitry Raimov to listen. He informed that the Ministry of Health of Ukraine will have an audit, a hotline for the patient will be created, letters sent to the Ministry of Health of Ukraine from patients, patient organizations will not disappear. The Minister will study the issue of reducing the financing of rare (orphan) diseases in 2020. We will forget when no one came out of the Ministry of Health of Ukraine at the request of patients.
Dear President of Ukraine Mr. Volodymyr Zelensky, turn on the green light to patients with rare (orphan) diseases of Ukraine !!! We are in danger !!!