RESOLUTION OF THE PRESIDENT OF THE REPUBLIC OF UZBEKISTAN

of November 3, 2025 No. PP-331

About approval of the Program of measures for the organization of rendering the medical and public assistance to the children having rare (orphan) and other heritable and genetic diseases for 2026 - 2030

According to the resolution of the President of the Republic of Uzbekistan of May 19, 2025 "About measures for realization of National strategy of the Republic of Uzbekistan for fight against children's cancer for 2025 - 2030" and for the purpose of timely diagnostics and treatment of the children having rare (orphan) and other heritable and genetic diseases of enhancement of medical and social services in the available and revealed new types of heritable and genetic diseases in 2026 - 2030 I decide No. PP-186:

I. Purposes

1. Determine main objectives of treatment and prevention of rare (orphan) and other heritable and genetic diseases in 2026 - 2030:

(a) bringing from 5 types to 10 rare species (orphan) and other heritable and genetic diseases which treatment is performed on free basis at the expense of means of the Government budget;

(b) bringing from 95 percent to 99 percent of level of providing with medicines, special food and products of medical appointment of the children having rare (orphan) and other heritable and genetic diseases;

(c) health protection and rehabilitation of the children having rare (orphan) and other heritable and genetic diseases and also creation of conditions for improvement of quality of life of children and their participation in public life.

II. The organization of works on rendering the medical and public assistance to the children having rare (orphan) and other heritable and genetic diseases

2. For goal achievement and the priority tasks determined by this resolution to approve the Program of measures of the organization of works on rendering the medical and public assistance to the children having rare (orphan) and other heritable and genetic diseases, for 2026 - 2030 (further - the Program) according to appendix No. 1 *, providing:

(a) providing on free basis medicines, special food and products of medical appointment for treatment of the patients having such diseases as mukovistsidoz, talassemiya, hemophilia, juvenile arthritis with the system beginning, congenital bullous epidermoliz, primary (congenital) immunodeficiency, Dyushenn's miodistrofiya (muscular dystrophy), sclerous pan-encephalitis, and also diseases to Gosha and Pompa, at the expense of means of the Government budget of the Republic of Uzbekistan and grants;

(b) carrying out among the population of broad information and promotional campaign.

3. Establish procedure according to which since January 1, 2026 medical observation of patients aged from 18 years till 21 year (inclusive) having rare (orphan) and other heritable and genetic diseases, and also measures for their treatment are performed on free basis at the expense of means of the Government budget.

III. Financial provision

4. To the Ministry of Economics and finance on the basis of reasonable calculations of the Ministry of Health since 2026 to provide necessary means when forming parameters of the Government budget.

IV. Enhancement of procedure for financing of expenses on actions in the direction of health care

5. Establish procedure according to which the means necessary for financing of expenses on the following events in the direction of health care, since 2026 are annually provided in parameters of the Government budget:

(a) the organization of works on early diagnosis of viral hepatitis of types "With" and "In", to antiviral special treatment;

(b) improvement of quality of prevention and treatment of endocrinological diseases;

(c) enhancement of service of nephrology and hemodialysis;

(d) development of services of hematology and transfusiology, and also further support of persons having oncohematological and diseases hard to cure;

(e) carrying out transactions on transplantation of kidneys and liver.

At the same time before adoption of the separate regulatory legal act providing program implementation in this directions, means are planned in the procedure established by the existing acts of the legislation and on the basis of reasonable calculations.

V. Organization, providing and control of execution of the resolution

6. Approve the Plan of conducting monitoring of execution of this resolution according to appendix No. 2*. At the same time:

(a) To the Ministry of Health according to the Plan of conducting monitoring annually till February 15 to carry out monitoring of execution of this resolution which results to bring in Audit Chamber and the Ministry of Justice;

(b) To Audit Chamber together with the Ministry of Justice based on the Plan of conducting monitoring to control execution of this resolution and annually till February 25 to enter information in Administration of the President of the Republic of Uzbekistan;

(c) in case of removal from control of execution of this resolution in the Ijro.gov.uz system to consider goal achievement, specified in respect of conducting monitoring.

7. To the Ministry of Health together with National broadcasting company of Uzbekistan, the Ministry of the higher education, science and innovations, Committee of family and women, Agency on cases of youth, Council of Ministers of the Republic of Karakalpakstan, khokimiyats of areas and the city of Tashkent, and also non-state non-profit organizations on permanent basis of message propaganda activities on prevention of rare (orphan) and other heritable and genetic diseases, forming of healthy family and the birth of the healthy child among the population on system basis.

8. Make changes and additions to some acts of the President of the Republic of Uzbekistan and the Government of the Republic of Uzbekistan according to appendix No. 3.

9. To the Ministry of Health together with the interested ministries and departments in three-months time to make in the Cabinet of Ministers offers on the changes and amendments in acts of the legislation following from this resolution.

10. Assign to the Minister of Health A. A. Hudayarov, the Chairman of the board of Ministers of the Republic of Karakalpakstan, hokim of areas and the city of Tashkent the personal responsibility for the effective organization of execution of this resolution.

11. Discussion of course of execution of this resolution, implementation of coordination and the control of organization activity responsible for its execution to assign to the Prime Minister of the Republic of Uzbekistan A. N. Aripov.

Appendix No. 3

to the Resolution of the President of the Republic of Uzbekistan of November 3, 2025 No. PP-331

Changes and additions made to some acts of the President of the Republic of Uzbekistan and the Government of the Republic of Uzbekistan

Disclaimer! This text was translated by AI translator and is not a valid juridical document. No warranty. No claim. More info