Patients with rare diseases and their caregivers are anxiously awaiting the full implementation of the National Plan for Rare Diseases, which was supposed to provide better care and access to modern therapies. Although the plan was adopted by the government in August 2021, many of its key points have still not been implemented.
Implementation of the National Plan for Rare Diseases. There is a response from the Ministry of Health
Published Sept. 9, 2024 08:25
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The Ombudsman for Human Rights (Ombudsman) has repeatedly drawn attention to the need to implement the plan, asking the Health Ministry about specific deadlines and the implementation of its points. In response, the Health Ministry reports ongoing work and new agreements on the remainder of the document, but also points to delays in implementation due to the innovative solutions enshrined in the plan.
Key elements of the plan
The National Plan for Rare Diseases includes a number of measures to improve the situation of patients, including:
- Creation of expert centers for rare diseases - responsible for overseeing the diagnosis and treatment of patients.
- Improving diagnosis of rare diseases - including access to modern diagnostics, such as genomic technologies.
- Increasing access to medicines and special dietary supplements - providing patients with essential therapies.
- Launch of the Polish Register of Rare Diseases - a disease monitoring system.
- Introducing the Rare Disease Patient Charter, a document containing key clinical data.
- Information Platform "Rare Diseases " - a resource for clinical, scientific and organizational knowledge.
What's next?
Despite work on revising the plan and adopting a new edition for 2024-2025, many provisions are still waiting to be fully implemented. Patients and their caregivers are hoping for rapid implementation of promises that will bring real changes in their quality of life. The Ombudsman continues to call for accelerated action and full transparency from the Health Ministry on the progress of the plan.
Health Ministry response
The Health Ministry reports that work is underway to implement the National Plan for Rare Diseases. The process is being prolonged due to the innovative solutions included in the plan. Internal arrangements are currently being made for the new part of the document, which is a continuation of the plan published in 2021. Nevertheless, activities in some areas, such as the creation of Rare Disease Expert Centers, are continuing. The Ministry assures that the plan remains a priority and will continue in 2024-2025.
Source: RPO
