Patients with rare diseases are a vulnerable group in society, facing numerous challenges in terms of medical care, medication, daily life, and long-term care. They are a group that requires close attention in the field of health and welfare. For this event, we invited Ms. Chen Guan-Ju, CEO of the Taiwan Foundation for Rare Disorders, to introduce the current state of rare diseases, the challenges patients face in daily life, and the support provided by the foundation. She also explained how genetic testing (such as newborn screening) can help in the early identification of affected individuals, which can prevent severe health deterioration in the future. Additionally, we invited Mr. Wei Yi-Chun, a patient with fibrodysplasia ossificans progressiva, to share his personal story of enduring pain from a young age and growing up to become a singer. This event aims to enhance students' understanding of rare diseases, deepen their appreciation of life’s resilience, and foster a sense of empathy. We hope this event inspired a sense of social responsibility among students, encouraging them to contribute to the support and care of vulnerable groups in the future.

Implemented by Department of Health and Welfare
Date: 2024/11/05