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KZP 2024

Equity in care for patients with rare diseases: challenges and lessons for public health systems

MedExpress Team

Medexpress

Published Dec. 11, 2024 09:06

Equity in care for patients with rare diseases: challenges and lessons for public health systems - Header image
The entry criteria for drug program B.122, the prophylactic treatment of angioedema, will be changed in accordance with the responsible entity's request, a Health Ministry representative announced at the Public Health Congress.

Rare diseases, the experts stressed, have only relatively recently been seen and analyzed in the context of public health - although they undoubtedly pose a challenge, given that in Poland, according to very conservative estimates, some 3.5 million people suffer from them. - In fact, the number affected by rare diseases must be multiplied by at least two, perhaps even three. This is because they also affect the people closest to the patients, who often accompany them in their lifelong struggle with the disease," reminded Prof. Anna Kostera-Pruszczyk, chairwoman of the Council for Rare Diseases, head of the Department of Neurology at WUM.

As one of the main achievements of recent years, the expert pointed to advances in diagnostics that make it possible to shorten the diagnostic odyssey. As a result, the patient receives a diagnosis faster, but also the system saves powerful resources (no duplication of visits, tests, refraining from treating misdiagnosed diseases). This also translates into shorter queues for tests and specialists. In some cases, an accurate diagnosis can also result in greater protection for family members (genetic testing).

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