A safe space built specifically for South Asian women navigating rare disease — whether as a patient, caregiver, or advocate.
Every episode is a real conversation with a real woman sharing her unfiltered experience without a script.
We explore how cultural context, family dynamics, and South Asian identity shape the rare disease experience.
Rare disease is isolating by nature. This podcast helps women find others who truly understand.
Each episode surfaces tools, organisations, and strategies that have made a real difference.
The more we talk, the less invisible rare disease becomes. Every story is an act of advocacy.
The people behind South Asian Women in Rare.
Co-Founder & Host
Rare Disease advocate, living with Osteogenesis Imperfecta (OI). Co-founder and co-host of South Asian Women in Rare. Passionate about raising awareness through advocacy, storytelling, and community engagement. Building connections, and helping drive positive change for people living with rare conditions.
Co-Founder & Host
Rare Disease specialist and a healthcare professional with a Masters in Clinical Nutrition. A dedicated patient advocate and caregiver, inspired by her journey as a mother of two children with multiple rare and ultra-rare conditions. Passionate about supporting families, advancing patient engagement, and creating spaces where lived experiences are heard and valued.
Content & Support
Librarian, poet and creative writer. Providing support for South Asian Women in Rare ensuring the content is clear, engaging and accessible. Best friends with Niveda living with Osteogenesis Imperfecta (OI) and is passionate about learning and supporting for the awareness and understanding of rare conditions
Web Developer
Rare Disease Advocate and Software Engineer living with Hemophilia. Loves building solutions, networking and travel and fitness. Supporting South Asian Women in Rare through his technical expertise.
Are you a South Asian woman with lived experience of rare disease? We'd love to have you on the show. Your story could be exactly what someone else needs to hear.
Get in touchNew here? Here are some answers to questions we hear often from guests and listeners.
Ask us somethingSouth Asian Women in Rare is for South Asian women who are living with a rare disease, caring for someone who is, or working in the rare disease space. It's also for anyone who wants to better understand these experiences.
We'd love to hear from you. Visit our Contact page and send us a message with a bit about your story. We welcome guests at all stages of their journey — you don't need to have it all figured out.
All episodes are available to watch directly on this website. You can also find us on YouTube. Podcast audio versions are coming soon.
Not at all. Caregivers, family members, healthcare professionals, and allies are all warmly welcome. Rare disease touches everyone around the person diagnosed.
Yes! We read every message we receive. If there's a topic, guest, or lived experience you think deserves airtime, please reach out through our Contact page.
