Patient Perspectives: Vaila Morrison – Architect, Mother and Rare Disease Advocate (KAT6A syndrome) скачать в хорошем качестве

Patient Perspectives: Vaila Morrison – Architect, Mother and Rare Disease Advocate (KAT6A syndrome)

All our research and efforts are aligned in a common goal: to improve the lives of patients. Join us as we explore how genomics is impacting the lives of patients and their families. In this week’s Patient Perspectives, we are joined by Vaila Morrison, an architect passionate about inclusive design and mother to a child with an ultra-rare neurodevelopmental disorder known as KAT6A syndrome. Morrison’s daughter, Eilidh, was diagnosed at the age of six after taking part in the Deciphering Developmental Delay (DDD) study. In this interview, Morrison discusses her daughter’s long diagnostic odyssey, what it was like to finally get a diagnosis and what she has learned from caring for a child with an ultra-rare genetic condition.