The Minister of Health, Azir Aliu, together with the Rare Diseases Association "Jeta me Sfida", held a press conference on the occasion of the symposium within the framework of the "You are a rare hero" campaign, with the common goal of improving knowledge and practices in the early detection and diagnosis of rare diseases.
"Rare diseases are not rare for those who live with them! This topic is of particular importance, as primary care physicians, as the first point of contact with the patient, have a key role in the early detection and referral of persons suspected of having a rare disease. Within the Rare Diseases Program for 2025, a total of 58 medicines have been provided for around 430 patients, including three new therapies for juvenile rheumatoid arthritis, Friedreich's ataxia and Dravet syndrome. More than a thousand patients have been identified in the Rare Diseases Registry today, and the Ministry remains fully committed to improving the system for their diagnosis, treatment and rehabilitation", emphasized Minister Aliu at the conference.
The Ministry of Health says that in the coming period, the Ministry will work on several priorities, including: evaluating and analyzing existing equipment for diagnosing rare diseases in public and private health institutions; updating the list of laboratories where biochemical and genetic testing is performed, with particular emphasis on the continuous education of doctors, especially family medicine doctors and specialists, for the timely recognition, diagnosis and prevention of rare diseases; as well as creating a clear path for the movement of patients at the primary, secondary and tertiary levels, in accordance with evidence-based medicine and European protocols.
"The national strategy for rare diseases has already been submitted to the Government, and is expected to be approved by the end of the year. This strategy will be the basic document for improving the quality of life of people with rare diseases, not only through therapy, but also through psychosocial support, rehabilitation and social inclusion. Our common goal as a system, as professionals and as a society is to ensure early diagnosis, modern treatment and a dignified life for every patient", - emphasized Aliu.
