Functions

The Commission for Rare Diseases was established by Order of the Minister of Health. By Order №16 from 30.07.2014, the Ministry of Health are certain terms and conditions for registration of rare diseases and centers of expertise and reference networks for rare diseases. / the word "Ordinance 16" is a link to the ordinance itself /. The administrative and technical servicing of the commission's activity is provided by the National Center for Public Health and Analysis. The Commission assists the Minister of Health and the Director of the National Center for Public Health and Analysis by:

• Expresses opinions to the Minister of Health on proposals for inclusion of diseases in the list of rare diseases established in the Republic of Bulgaria
• Makes proposals to the Director of the National Center for Designation of Expert Centers and Reference Networks for Rare Diseases
• Performs an assessment of the activity of the National Register of Patients with Rare Diseases
• Performs evaluation of the activity of the expert centers and reference networks for rare diseases
• Prepares opinions and submits proposals to the Ministry of Health, the National Health Insurance Fund, the Executive Agency for Medicines, the National Council for Prices and Reimbursement of Medicinal Products, universities, hospitals and other bodies and persons on prevention, diagnosis, treatment, follow-up, rehabilitation and medical expertise of rare diseases, incl. medical training in the field of rare diseases.
• Cooperates with bodies in the Member States of the European Union, other countries and international organizations active in the field of rare diseases
• Performs other activities defined by Ordinance №16 of 2014 on the terms and conditions for registration of rare diseases and for the expert centers and reference networks for rare diseases.

Composition of the commission

Minutes of committee meetings

Register of expert centers for rare diseases in Bulgaria

Statements

Application for a disease proposal for inclusion in the List of Rare Diseases

Application for a designation of an expert center for a rare disease / rare diseases

Orders for the List of Rare Diseases

Order of the Ministry of Health to supplement the List of Rare Diseases - 27.02.2020

Order of the Ministry of Health to supplement the List of Rare Diseases - 10.01.2019

Order of the Ministry of Health to supplement the List of Rare Diseases - 04.04.2017

Order of the Ministry of Health to supplement the List of Rare Diseases - 30.03.2016

Order of the Ministry of Health for approval of the List of rare diseases - 27.11.2015

Disease records included in the List of Rare Diseases

Useful relationships

European portal for rare diseases Orphanet

Genetic and Rare Diseases Information Center, National Institutes of Health, USA

Information center for rare diseases and orphan drugs

Directorate-General for Health and Food Safety (SANTE), European Commission

European reference networks for rare diseases