Mar 5 • 23:35 UTC 🇰🇷 Korea Hankyoreh (KR)

"Policy Improvements Have Become Clear, but Further Awareness Expansion Is Needed"

Every February 28 (or February 29 in leap years) is World Rare Disease Day, an initiative to raise awareness and improve treatment environments for the over 300 million people globally suffering from various rare diseases.

World Rare Disease Day is observed each year on the last day of February, aiming to heighten awareness and prompt improvements in treatment environments for the approximately 300 million people worldwide affected by a range of rare diseases. In South Korea, this day is recognized under the name 'Rare Disease Overcoming Day', established as a legal public health celebration. Currently, there are over 1,389 types of rare diseases registered in the country, with around 62,000 new cases in the most recent statistics, though many hidden rare disease sufferers remain unrecognized due to a lack of information and the challenges in achieving accurate diagnoses, often leading to a diagnostic odyssey lasting around ten years.

This year is particularly significant as President Lee Jae-myung has formalized the strengthening of the state's responsibility for rare and severe intractable diseases, a first in the history of the government. The Ministry of Health and Welfare, alongside other agencies, announced measures to enhance support for these conditions, including expedited new drug supplies within 100 days, increased financial support for medical care and special food, and simplified registration procedures for rare diseases over five-year cycles.

Jin-hyang Jung, Secretary General of the Korea Rare and Intractable Disease Union, stated that the President's public interest has noticeably changed the government and public perception regarding rare diseases, and while recent policy improvements are welcomed, timely implementation is crucial for patients to feel the benefits. He noted that although the medical aspects of the system are improving, the welfare aspects remain insufficient, illustrating how rare diseases are not adequately recognized within existing frameworks. Therefore, enhancing awareness and understanding of rare diseases really necessitates an increase in related information, and events commemorating Rare Disease Day by individual enterprises are a step toward fulfilling that goal.

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