Episodes

Stories, journeys, and insights from South Asian women living with or supporting someone with a rare disease.

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Episode 1 through 3 of 3 total episodes

  • Thumbnail for From Rare Disease Patient to Global Advocate

    From Rare Disease Patient to Global Advocate

    Ep. 2

    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.

    Guest: Sumaira
  • Thumbnail for Introducing the hosts of South Asian Women in Rare

    Introducing the hosts of South Asian Women in Rare

    Ep. 1

    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.

    Guest: Niveda and Parvathy
  • Thumbnail for Trailer

    Trailer

    Ep. 0

    Hi and Welcome to South Asian Women in Rare

    Guest: South Asian Women in Rare