News

This is the opinion of Stanisław Maćkowiak, president of the National Forum for Rare Disease Therapy ORPHAN and president of the Federation of Polish Patients, who presented the results of the 2023 audit by the National Forum for Rare Disease Therapy at the latest IRSS conference. The information obtained allowed for the identification of key needs in patient care.

As many as 96 percent of organizations pointed to the need for improvements and optimization of the care model for patients with rare diseases in Poland, particularly by creating coordinated and comprehensive care. Moreover, over 90 percent highlighted the necessity of organizational changes. The most important of these changes include the establishment of expert centers, patient registries for rare diseases, and the introduction of a patient card for individuals with rare diseases.