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A rare disease is generally defined by the incidence rate of a certain disease in a particular region. Therefore, different regions might have different definitions of rare diseases. For example, in Europe, a disease that affects less than 1 in 2,000 people are called a rare disease. In Japan and the United State, rare diseases incidence rate is about 1 in 2,500 and 1 in 1,500 respectively. Sometimes other considerations might be included in defining rare diseases, such as unknown etiology or no effective treatment of diseases.
Do You Know?
According to research conducted by the University of Hong Kong, 1 in 67 Hong Kong people have a rare disease, accounting for 1.5% of the total population of Hong Kong.
Awareness is the first step toward change. Understanding rare diseases helps in early diagnosis, which is crucial for managing symptoms and potentially extending life expectancy. Organizations around the globe are tirelessly working to support affected individuals and fund research projects. These efforts aim to unlock new knowledge about these diseases, bringing hope to those feeling isolated in their health journey.
Reference:
Chiu ATG, Chung CCY, Wong WHS, Lee SL, Chung BHY. Healthcare burden of rare diseases in Hong Kong - adopting ORPHAcodes in ICD-10 based healthcare administrative datasets. https://pubmed.ncbi.nlm.nih.gov/30153866/
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