Rare Disease Day – February 27, 2026
The world rare disease day has been symbolically celebrated since year 2008 on the rarest day of the year which is on the February 29. However, in non-leap years, it is celebrated on the February 28. General Hospital Slovenj Gradec organized an awareness booth for the second year in a row to raise a public awareness about rare diseases, the challenges faced by patients and their families in everyday life, and the importance of early diagnosis and access to treatment.
Rare diseases are those that affect a small number of people in a given population. In Europe rare diseases are considered rare if they affect 5 or fewer patients per 10,000 inhabitants. There are approximately 7,000 known different rare diseases, affecting 6-8% of the population. In Slovenia, this means between 120.000 - 150,000 people.
On this day we highlighted through informational materials and advice from healthcare staff the importance of early disease recognition, access to appropriate diagnostics, treatment, comprehensive support for patients and emphasized the issues faced by patients with rare diseases. We also presented the organisation of our Fabry Center which serves as an example of the best practice in managing rare diseases. Fabry Center which is the only specialized center in the country for the treatment and management of Fabry disease provides patients care within a multidisciplinary team involving experts from various fields, ensuring they receive all the necessary professional support for the highest possible quality of life.
We believe that events like these help the public to hear and see that there are also very rare diseases, contributing to better understanding and acceptance of patients with rare diseases, as well as broader access to appropriate healthcare.
Slovenian Fabry patient’s society excursion to the Vipava valley
Members of the Fabry Center, who are also members of the Fabry patients’ society, took part in a trip to the Vipava Valley together with the patients on November 22, 2025. The participants saw the Vipavski Križ and the monastery, where the society's general meeting was also held in the castle cellar. At the general assembly, we adopted the necessary changes to the society's statutes, held elections for the new leadership (president, vice-president, and treasurer), and appointed the society's expert council.
The Fabry Center's cooperation with society is essential, as it strengthens patient support, enables the exchange of professional knowledge, and contributes to improving the quality of treatment and life of people with this rare disease. The joint action of experts and patients enables better understanding of the disease, the development of new therapeutic approaches, and the effective representation of patients' interests in the health care system.
Such events, such as the excursion and the general meeting, are crucial for strengthening the community, improving communication, and creating better conditions for all sufferers, which is fundamental for long-term support and control of Fabry's disease.
3rd International Fabry School for Nurses at Slovenj Gradec General Hospital
From 23 to 24 October 2025, the 3rd International Fabry School for Nurses was held at the Fabry Center of the Slovenj Gradec General Hospital, bringing together participants from Estonia, Latvia, Lithuania, and Slovenia. It was intended for in-depth education and professional training in the treatment and management of patients with Fabry disease. The event included professional lectures, workshops, and in-depth discussions to exchange knowledge and best practices in the care of patients with this rare, progressive disease.
As part of the two-day program, nurses learned about the latest findings on the organization of the Fabry Center, modern diagnostic approaches, and comprehensive treatment of the disease, which includes both pharmacological and psychosocial aspects. Special emphasis was placed on individualized treatment planning and psychosocial support, both key to improving patients’ daily lives and long-term well-being.
Participants actively participated in practical workshops where they discussed real clinical cases, which allowed them to connect theoretical knowledge with daily clinical practice. This approach strengthened their expertise and equipped them with the tools for personalized patient care at the local and international levels.
The Fabry Center in Slovenj Gradec, which has been operating for more than two decades, is an internationally recognized reference institution for the diagnosis and treatment of Fabry disease. The center demonstrates high professionalism, innovation, and a multidisciplinary approach, focusing on implementing modern therapeutic protocols and providing comprehensive patient support. This combination of knowledge, experience, and collaboration solidifies the Fabry Center as an exemplary example of good practice in the field of rare diseases.
The event represents an exceptional opportunity for nurses to broaden their professional horizons, enhance their clinical competencies, and thereby contribute to even better patient care for patients with Fabry disease.
International Fabry School 2025 in Slovenj Gradec
The 17th International Fabry School took place at the Fabry Center at the General Hospital Slovenj Gradec from 11–13 September, 2025, bringing together numerous renowned experts from around the world. The three-day event offered an in-depth insight into the activities of the Fabry Center, and facilitated the exchange of knowledge through a series of expert lectures featuring distinguished foreign and Slovenian specialists.
Lectures, presentations, workshops and discussions were held at the Hugo Wolf Museum and at the Fabry Center itself. Experts presented various aspects of Fabry disease, ranging from diagnosis and treatment to the relationships among physicians, nurses and patients, supported by real clinical cases.
The Fabry Center has been operating at the GH Slovenj Gradec since 2004. The first Slovenian patient with Fabry disease was identified at this centre in 1991, followed shortly after by the diagnosis of his brothers. Treatment with enzyme replacement therapy has been provided in Slovenj Gradec since 2003. Over the years, the Fabry Center has become a reference multidisciplinary centre, where alongside medical care the social aspects of the disease are also addressed, as patients are often already traumatised after having received inadequate treatments.
The Fabry Center is an exemplary model of the provision of comprehensive care for a rare disease at the international level. The broader Slovenian healthcare community recognises the importance of the latest diagnostic and therapeutic methods that are being implemented at the centre, in order to improve the quality of life of patients.
Public Statement on Fabry Disease
Activities on the 20th Anniversary of the Fabry Center
Rare Disease Day – February 28, 2025
Each year there is a Rare Disease Day on the last day of February. In 2025, General Hospital Slovenj Gradec organised a special booth to raise public awareness about rare diseases, the challenges faced by patients and their family members, and the importance of early diagnosis and access to treatment.
Rare diseases are those that affect a small number of people in a given population. A disease is considered rare in Europe if it affects five or fewer individuals per 10,000 inhabitants. There are approximately 7,000 known different rare diseases affecting 6-8% of the population, and in Slovenia this amounts to about 150,000 people.
As part of this special day, informational materials and consultations with health professional highlighting issues faced by patients with rare diseases were featured in the hospital lobby. The importance of early disease recognition, access to appropriate diagnostics and comprehensive patient support were emphasised. The activities of the Fabry Center were also presented as a model of good practice in rare disease management.
Key highlights of the event included:
- Raising public awareness about rare diseases and their impacts on patients' lives.
- Emphasising the importance of early diagnosis and access to treatment.
- Highlighting the significance of a holistic approach in managing patients with rare diseases.
- Promoting societal understanding and support.
We believe that events like this contribute to better understanding and acceptance of patients with rare diseases as well as wider accessibility to appropriate healthcare services.
The Fabry Disease Treatment Center at the General Hospital Slovenj Gradec, led by Bojan Vujkovac, MD, specialist of internal medicine, is the only centre in Slovenia dedicated to the management of this rare, hereditary disease. The centre has received recognition both domestically and internationally for many years.
You are invited to view the related content!
https://www.pharmonia.si/tematske-priloge/fabryjeva-bolezen