A consortium led by Ipsen Korea hosted a rare disease awareness event on February 25, focusing on the challenges faced by patients with rare liver diseases, including Primary Biliary Cholangitis (PBC) and biliary atresia. The event, held at Ipsen Korea’s headquarters, brought together patient advocacy groups and medical professionals to discuss treatment gaps and the need for improved care pathways.
The initiative comes as awareness of rare diseases gains momentum globally, with February 29 designated as Rare Disease Day. Ipsen Korea, a global mid-sized biopharmaceutical company, and the Korea Rare and Undiagnosed Disease Association (KORDA) co-hosted the event, aiming to highlight the specific difficulties experienced by individuals with PFIC (Progressive Familial Intrahepatic Cholestasis), Alagille syndrome, biliary atresia, and PBC – conditions that form a spectrum of rare liver diseases.
During the event, Ipsen Korea’s Head of Rare Diseases Medical Affairs, Kwon Gu-young, emphasized the critical need for early diagnosis and long-term management of PBC, a condition that disproportionately affects middle-aged women. He noted that limited awareness within Korea leads to delayed diagnoses, restricted treatment options, and a lack of comprehensive monitoring systems. Ipsen Korea plans to prioritize raising awareness of PBC this year through medical professional education, data-driven approaches, and collaboration with patient organizations.
Bang Hyun-jin, Secretary-General of KORDA, addressed the challenges faced by children with biliary atresia as they transition to adult care. While surgical success rates for infants are high, a lack of a structured transition system leaves patients navigating a dangerous gap in care. Bang stressed the urgent need for a continuous care system extending from childhood into adulthood.
Kim Ji-soo, representative of the PFIC Patient Association, described the profound impact of PFIC not only on patients but on their entire families, citing issues such as chronic itching, sleep disturbances, and nutritional problems that lead to social isolation. Yang Mi-sun, CEO of Ipsen Korea, acknowledged the often-invisible but life-altering nature of rare liver diseases.
The event underscored the need for a multi-faceted approach to improving the lives of those affected by rare liver diseases, including increased medical education, improved data collection, and stronger partnerships between pharmaceutical companies, patient advocacy groups, and healthcare providers. Ipsen Korea has committed to strengthening its collaboration with patient organizations and medical professionals to address these challenges.
