The National Centre for Inherited Metabolic Disorders (IMD) for adults is a rapidly growing service dealing with rare diseases. Advancements in medicine and dietary treatment prolonged the life expectancy of IMD patients who now survive into adulthood, putting a strain on the current system.
Working with the Mater Hospital, my research project aims to improve the pediatrics to adult transition process for adolescent patients with inherited metabolic disorders. I aim to make a positive impact for patients with IMDs by identifying and addressing the gaps in the current transition service. This exciting endeavor recognizes the challenges faced by patients as they navigate the healthcare system and aims to make a positive impact on their well-being.
Through collaborative efforts and a patient-centered approach, I aspire to support young IMD patients to independently manage their condition and ensure a smoother transition from pediatric to adult care. This research has the potential to bring about meaningful improvements in the lives of young patients with chronic illness by empowering them to take ownership of their own health.