ADOPTING ORPHAN DISEASES RARE INTERSTITIAL LUNG DISEASES

adoptingorphandiseaseskapak

RARE INTERSTITIAL LUNG DISEASES IN MEDICAL AND POSTGRADUATE EDUCATION

Ilgım Vardaloğlu1 Göksel Altınışık2

1İstanbul University, Cerrahpaşa Faculty of Medicine, Department of Chest Diseases, İstanbul, Türkiye
2Pamukkale University, Faculty of Medicine, Department of Chest Diseases, Denizli, Türkiye

Vardaloglu I, Altinisik G. Rare Interstitial Lung Diseases in Medical and Postgraduate Education. In: Altinisik G, McCormack FX, editors. Adopting Orphan Diseases: Rare Interstitial Lung Diseases. 1st ed. Ankara: Türkiye Klinikleri; 2025. p.187-196.

ABSTRACT

Rare interstitial lung diseases (ILDs) are often not adequately covered in medical education due to their low prevalence, yet they create major challenges for patients and healthcare providers. Many physicians may first encounter these diseases in clinical settings without having received proper training, which can lead to delayed diagnoses and negative impacts on patients. Educational programs often include rare ILDs under broader topics, without focusing on their specific features. New methods such as telemedicine, pre-recorded patient-physician video consultations, and narrative medicine can help improve awareness, diagnostic thinking, and empathy. Involving patients directly in educational activities also supports better understanding. International organizations and patient foundations contribute valuable resources and training programs. Strengthening education on rare ILDs will help future doctors recognize these diseases earlier and provide better care. Practical, focused, and patient-centered approaches are essential to improve outcomes for patients with rare ILDs and to close existing gaps in medical training.

The educational framework for rare ILDs is shaped by the educators’ interests and experiences, as well as the institutions’ available resources. However, at the very least, basic knowledge is mandatory for any doctor who is guiding patients in managing rare ILDs or other health conditions. Medical education curricula should be reviewed from this perspective.

For pulmonologists who will provide healthcare to patients with rare ILDs, a satisfactory level of education must be ensured in terms of early diagnosis, optimal disease management, and communication skills specific to rare ILDs. From this perspective, the situation in different countries should be reviewed and appropriate adjustments should be made. To achieve this, both undergraduate medical education and pulmonology residency training should be standardized in coordination not only with relevant institutions but also with professional societies in pulmonology. Since rare ILD patients are generally referred to specialized centers, referring postgraduate pulmonology students to these centers for education on rare ILDs may be a viable option.

The methods used for educational purposes must be enriched to effectively reach target audiences, including medical students, physicians, patients, their relatives, and the general public. The needs must be revealed first, and innovative options need to be implemented and validated.

This chapter reviews how rare ILDs are addressed in undergraduate and postgraduate medical training and suggests innovative ways to improve and enrich education in this field.

Keywords: Interstitial lung diseases; Rare interstitial lung diseases; Medical education; Undergraduate; Postgraduate; Telemedicine; Narrative medicine; Curriculum

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