Although all human beings are susceptible to diseases, we continuously repeat the process of recovering our health through medical treatments. However, some patients suffer from incurable diseases whose etiologies are uncertain, exact diagnoses are difficult, and as a result, complete recovery is not possible. These incurable diseases include chronic diseases contracted by a large number of patients but with no complete cure and the need for lifelong management, such as diabetes mellitus, hypertension, cardiovascular diseases and cancer, in addition to rare and incurable diseases contracted by a small number of patients with a relatively small volume of epidemics data.
Chronic diseases are becoming a global challenge due to rapidly-progressing population aging, decline in physical activity and lifestyle changes such as increased intake of fat and beverages [1]. According to the World Health Organization (WHO), chronic diseases are the leading causes of deaths worldwide. As of 2015, 40 million out of 56 million deaths were caused by chronic diseases, and in addition, 1.7 million patients were predicted to die before the age of 70. Moreover, more than one third of the world’s population simultaneously suffer from multiple chronic conditions, which constitutes significant threats to patients’ health and imposes enormous costs on society. Specifically, medical costs in patients with multiple chronic diseases have been shown to increase by around 80 percent up to 300 percent, depending on age, gender and health conditions. Meanwhile, “rare and incurable diseases” are defined differently in each country, but generally refer to diseases for which the exact number of patients are unknown because of their small number of patients and difficulty of diagnosis [2]. As of 2016, the number of rare diseases registered on Orphanet, a portal for rare diseases, amounted to 6,084 and the worldwide population with rare diseases is estimated at 350 million. In Korea, the total number of rare diseases is estimated at around 2,000 and the affected population is calculated at 600,000 [3].
It is characteristic of incurable diseases that their symptoms are controllable by medication, lifestyle changes, operations, etc. but it is not possible to eradicate or treat the underlying causes. Although early diagnosis may allow the early completion of treatment, these diseases cause suffering to patients and their families due to the inadequacy of knowledge on the diseases, insufficient research development and support, and the consequent lack of awareness toward the need for self-care.