In this episode of South Asian Women in Rare, Neena shares her journey of living with Jansen's disease, an ultra-rare bone disease, and how her experiences led her to build a global community for others living with the condition.We talk about growing up with disability, South Asian culture and family, raising children with the same rare condition, navigating healthcare, and why patient voices are so important in shaping research and treatment. Neena also shares what it really means to be a “disease builder” when there is little existing knowledge, research or funding.A conversation about resilience, family, advocacy and creating change when you're starting with almost nothing.

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.

Welcome to the first episode of South Asian Women in Rare. In this introductory episode, hosts Niveda and Parvathy share their personal journeys, the inspiration behind the podcast, and their vision for creating a space that amplifies the voices of South Asian women affected by rare diseases.Join us as we begin this journey of storytelling, advocacy, and community. In future episodes, we'll be speaking with patients, caregivers, advocates, healthcare professionals, and researchers from across the rare disease community.

Hi and Welcome to South Asian Women in Rare