From Rare Disease Patient to Global Advocate

When Sumaira was diagnosed with a rare disease called seronegative neuromyelitis optica spectrum disorder (NMOSD) at just 24 years old, her life changed overnight. Instead of accepting the unknown, she turned her experience into action by founding a global patient advocacy organisation that has transformed the lives of thousands of people living with rare diseases. In this episode of South Asian Women in Rare, Sumaira shares her journey through diagnosis, the power of authenticity, breaking cultural expectations, navigating healthcare as a patient, and why people with lived experience deserve a seat at every decision-making table. This is an inspiring conversation about resilience, leadership, and creating lasting change in the rare disease community.