[Healing and Companionship] Pharmaceutical Companies Join Forces to Raise Awareness on Rare Disease Day
On Rare Disease Day, various companies in South Korea united to raise awareness about the challenges faced by patients with rare diseases, coinciding with a reported increase in the number of new cases in the country.
Rare Disease Day, observed annually on the last day of February, aims to raise awareness and promote better treatment environments for the over 300 million people worldwide affected by rare diseases. In South Korea, companies and patient organizations gathered to amplify voices advocating for increased recognition and understanding of these health conditions. The number of newly reported patients in South Korea has notably risen, with 62,000 cases documented in 2023, reflecting a 14% increase from the previous year. The observance of Rare Disease Day was established in 2008 by EURORDIS and over 65 other patient organizations, symbolically selected to fall on the rarest day of the calendar, February 29, which occurs every four years. Today, it has evolved into a global campaign involving more than 100 countries and is recognized as an official health commemorative day in South Korea. The theme for this year's event, 'MORE THAN YOU CAN IMAGINE,' stresses the complexities of rare diseases which manifest far beyond common perceptions, highlighting a wide range of disorders, diagnostic challenges, and issues regarding access to treatments as well as the significant burdens borne by patients and their families. Ipsen Korea participated in the observance by hosting a talk event on 'Raising Awareness of Rare Liver Diseases,' engaging with patient groups and advocates. The focus was on educating attendees about various rare liver diseases, including PFIC, Alagille syndrome, cholestasis, and PBC, while expressing a commitment to reducing patient isolation and improving awareness. Central to their advocacy, understanding of PBC was emphasized, particularly regarding the need for early diagnosis and continuous management, which are hindered by the conditionβs low public recognition in Australia. This initiative highlights the pressing need for improved medical education and resource allocation to address the growing challenges faced by rare disease patients in the country.