At the initiative of the Wife of the President, Elizabeta Gjorgievska, and on the occasion of the Rare Disease Day, an expert discussion on “Condition and improvement of health and social services for people with rare diseases” was organized today.”
In her address at the hybrid interactive event, Gjorgievska said that for people with rare diseases and their families, life with challenges is a daily struggle that is often accompanied by the struggle with prejudice, stigmatization and social isolation.
“Patients with rare diseases and their families are an example of courage and fighting spirit. They deserve equal access to health and social services, meeting their needs and eliminating problems for their full participation in society.”
Emphasizing the need to adopt a Strategy for Rare Diseases, Gjorgievska stressed that its adoption would enable systematic inclusion of rare diseases in the new legal solutions, which would facilitate early diagnosis, timely therapy and ongoing monitoring of patients with rare diseases.
Prof. Dr. Elena Sukarova-Angelovska, Prof. Dr. Viktorija Chaloska-Ivanova, Prof. Dr. Dijana Plasheska-Karanfilska, Ivana Hadzivanova, MA and Dr. Marija Hadzi-Hristovska also addressed the event and tackled several topics related to rare diseases, including the coping of our country with the challenges of people with rare diseases and their families , the provision of adequate psychological assistance to these persons, as well as the importance of educating students as future providers of health care regarding the recognition of rare diseases.
The debate was attended online by several civil society organizations for rare diseases that presented different aspects of the challenges faced by people with rare diseases and their views on taking further steps to improve the conditions for their easier inclusion in social life.
Rare Disease Day is marked for the fourteenth time in the world in coordination with EURORDIS, and, in our country, it was marked for the first time with an event in 2012, organized by the Association of Citizens with Rare Diseases “Life with Challenges” and since then every year events are organized to raise awareness among the general public and decision makers about rare diseases and their impact on patients’ lives.