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Maksym Stepanov initiates the adoption of the National Strategy for Rare (Orphan) Diseases In Ukraine.

27 May 2020
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Maksym Stepanov initiates the adoption of the National Strategy for Rare (Orphan) Diseases In Ukraine.

The Minister of Health of Ukraine, Maksym Stepanov initiates adoption of the National Strategy for Prevention, Diagnosis, and Treatment of Rare (Orphan) Diseases. The head of the Ministry of Health of Ukraine announced this at a meeting of the Verkhovna Rada Committee on Nation Health, Medical Care and Medical Insurance on May 27.  

I consider that it is necessary to adopt a National Strategy for the prevention, diagnosis, and treatment of orphan diseases. Because its absence threatens access to continuous adequate treatment of orphan patients, as well as providing them with vital medicines and special food. That it is necessary to adopt a National Strategy for the prevention, diagnosis, and treatment of orphan diseases. Every life is invaluable, so the attitude of the government and society to orphan patients is a litmus test for the civilization of the state. This is important for us.”- said Maksym Stepanov. 

Also, as the Minister of Health emphasized, the Ministry of Health of Ukraine supports the position of patient organizations. He considers that the works group, which is forming medicine for orphans patients, should include specialists, and listen to recommendations of representatives of patient organizations of the NGO “Orphan Diseases of Ukraine” Head  Tatiana Kulesha, president of the All-Ukrainian Association of Cystic Fibrosis, and NGO “Patients with pulmonary hypertension”.

Maksym Stepanov named the key components of the strategy for orphan diseases :

  • Create a register of citizens, who suffers from orphan diseases;
  • Provide an access to prevention, diagnosis, treatment, and rehabilitation of patients with orphan diseases;
  • Development of legal acts and Ukrainian   legislation  adaptation to the needs of providing care to patients (clinical treatment protocols, clinical guidelines);
  • Collections of statistical information about the frequency and spectrum of rare diseases in Ukraine;
  • Introduction of effective methods of early diagnosis rare diseases;
  • Introduction of effective methods of treatment and rehabilitation of patients with rare diseases to reduce the level of disability and mortality;
  • Training of qualified specialists in the diagnosis and treatment of rare diseases;
  • Increase doctors’ and patients’ awareness  of various rare diseases;
  • Development of scientific research in orphan diseases;
  • Ensuring patient with orphan diseases access to treatment;
  • Meeting the specific needs of people suffering from rare diseases, improving the system of rehabilitation and palliative care;
  • Creation of the necessary infrastructure that will ensure a clear, coordinated work of all components of the health care system;
  • Development of national and international cooperation in the field of prevention, diagnosis, and treatment of rare diseases;
  • Development of the system of public control in health care, interaction with profile associations of patients.

 

We will remind you that according to approximate data, one of two thousand Ukrainians suffers from an orphan disease.

In Ukraine, the problem of such diseases was acknowledged at the state level only in 2014 with the adoption of the relevant law.

However, this normative act is still not fully implemented, and the country does not even have a register of citizens suffering from rare (orphan) diseases.