The government has adopted a new Plan for Rare Diseases for 2024-2025. what assumptions?

Rare diseases are a group of diverse, chronic conditions that have a low incidence - less than 5 cases per 10,000 people. In Poland, 2 to 3 million people suffer from these diseases. Diagnosis of such diseases is often lengthy and complicated, and the conditions themselves are usually serious, chronic and sometimes life-threatening.

The plan envisages a number of solutions to provide comprehensive and coordinated health care, as well as to increase access to modern medical equipment, medicines and special dietary measures. A budget of nearly 100 million zlotys has been set aside to achieve these goals.

The main points of the plan

1. Establishment of Rare Disease Expert Centers
   The plan calls for the establishment of new Rare Disease Expert Centers to provide health services for patients suffering from these conditions. The goal of these centers is to provide highly specialized medical care, including access to advanced diagnostic testing and treatment.
2. Improving access to testing
   According to the plan, analyses are to be carried out by December 31, 2024 on how to supplement the list of guaranteed services and how to finance genetic testing. Also, highly specialized non-genetic tests, which are crucial in the diagnosis and monitoring of rare diseases, will undergo a funding analysis. On this basis, guaranteed benefits in this area will be supplemented by March 31, 2025.
3. Quality control of laboratories
   Quality control of laboratories that perform large-scale genomic testing, which is essential for genetic diagnosis of rare diseases, will be introduced. This is aimed at ensuring the highest quality of diagnostics and patient safety.
4. Access to modern equipment and medicines
   The plan provides for increased access to modern medical equipment, as well as medicines and specialized nutritional products, which are key to treating rare diseases.
5. Medical infrastructure
   The infrastructure of medical entities will be improved, with the aim of improving the quality of care for patients with rare diseases.
6. Development of the "Rare Diseases" Information Platform
   Launched in October 2023, the "Rare Diseases" Information Platform will be regularly updated and enriched with new information. This is aimed at expanding knowledge about rare diseases and supporting patients and their families in accessing reliable information.
7. Social campaign
   A nationwide social campaign will be conducted to raise public awareness of rare diseases. It aims to educate the public and increase empathy and understanding for those affected by these diseases.
8. System for Rare Diseases
   A System for Rare Diseases will be created, which will collect data from the Polish Register of Rare Diseases and the Rare Disease Patient Card. This system will be crucial for monitoring the medical care of patients and providing them with greater safety.

Source: MZ