When will the National Plan for Rare Diseases be implemented?

Marcin Wiącek refers to the issue of rare diseases in the context of the ministry's assurances regarding the implementation of the Plan for Rare Diseases. The Ombudsman has repeatedly pointed out the need for state action in this area. Therefore, in recent years, in speeches he has stressed the need to adopt a National Plan for Rare Diseases, in accordance with the Council Recommendations of June 8, 2009 on action in the field of rare diseases (2009/C 151/02).

It is gratifying to note the government's adoption of the Plan - a model of care towards patients with rare diseases, offering the prospect of improving access to the diagnostic and therapeutic process.

Nevertheless, the Plan is still not operational. According to § 2 of the Council of Ministers' resolution of August 24, 2021 on the adoption of the Plan for Rare Diseases, implementation of the Plan was set for 2021-2023. However, the resolution expired on December 31, 2023.

Thus, despite the tremendous work of experts on the Plan, the solutions contained therein have not yet been implemented.

The plan aims to ensure the sustainable implementation of health policies targeting the needs of patients with rare diseases, particularly in terms of improving the quality of medical care for patients with rare diseases. The plan includes:

• criteria for the establishment and operation of Rare Disease Expert Centers responsible for overseeing the diagnosis, diagnosis and treatment of patients with rare diseases;
• Identify directions for improving diagnosis of rare diseases, including accessibility to modern diagnostic methods using genomic technologies;
• Proposals to improve access to drugs, medical devices and foodstuffs for special nutritional uses for rare diseases;
• Launching a monitoring system for rare diseases through the creation of the Polish Register of Rare Diseases;
• creation of a medical document of a patient with a rare disease, which will include clinical data - Rare Disease Patient Passport;
• Creation of the "Rare Diseases" Information Platform, containing clinical, scientific and organizational information on rare diseases.

Patients and their caregivers are looking forward to implementing all areas of the Plan with great hope and anticipation.

The Ombudsman asks the Minister for her position, in particular to indicate what comprehensive actions and goals for the implementation of the various points of the Plan have been taken and achieved, and what the Ministry's plans are in this regard. He also asks for information on when all the points of the Plan are expected to be implemented.

Source: RPO