The course introduces students to the characteristics, educational procedures, and rehabilitation approaches in the field of rare diseases.
Course content:
Educational and rehabilitation assessment, methods, and programmes in the field of rare diseases. Quality of life for people with rare diseases and their families. Programmes aimed at raising awareness of rare diseases and the experiences of families of patients. The impact of rare diseases on education and daily life. Advocacy activities for the protection of patients' rights. Introduction to the programmes and activities of the Croatian Association for Rare Diseases. Clinical presentation and quality of life of people with rare diseases, including epidermolysis bullosa, cystic fibrosis, Tourette syndrome, DiGeorge syndrome, scleroderma, Cornelia de Lange syndrome, and others.
Learning outcomes at the course level:
Assess the factors and characteristics affecting the quality of life of people with rare diseases and their families. Critically evaluate the exercise of rights and the assumption of responsibility by all stakeholders in systems that develop models and provide care and support for people with rare diseases. Advocate for and develop procedures to improve social inclusion and the development of modern models and community support programmes for people with rare diseases.
Interpret scientifically based information about the educational and rehabilitation process, or support systems for people with rare diseases, to both professional and general audiences.
|
-
Iskustva obitelji djece s Dravet sindromom, Diplomski rad, Ćuruvija, M., Sveučilište u Zagrebu Edukacijsko-rehabilitacijski fakultet, 2021.
-
Percepcija majki djece s rijetkim bolestima o kvaliteti podrške sustava djeci i obiteljima, Diplomski rad, Glavina, K., Sveučilište u Zagrebu Edukacijsko-rehabilitacijski fakultet, 2023.
-
Podizanje svijesti o DiGeorgeovom sindromu u školskom okruženju, Diplomski rad, Grahovac, V., Sveučilište u Zagrebu Edukacijsko-rehabilitacijski fakultet, 2024.
-
Uloga edukacijskog rehabilitatora u poboljšanju kvalitete života osoba oboljelih od bulozne epidermolize, Pavlinić, S., Sveučilište u Zagrebu Edukacijsko-rehabilitacijski fakultet, 2018.
-
Rijetka biblioteka, https://rijetke-bolesti.com/rijetke-bolesti/biblioteka/,
-
Utjecaj rijetkih bolesti na obrazovanje i svakodnevni život, Diplomski rad, Štefan, M., Sveučilište u Zagrebu Edukacijsko-rehabilitacijski fakultet, 2023.
-
Rare diseases: a global health priority for equity and inclusion, https://apps.who.int/gb/ebwha/pdf_files/EB156/B156_CONF2-en.pdf, WHO, WHO, 2025.
|
