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Rare Humans of India is an initiative dedicated to bridging the gap for individuals and families affected by rare diseases. By sharing powerful personal stories, we aim to create a network of support and understanding in a space where isolation is often the norm.
Through collaborations with hospitals and healthcare professionals, the platform provides clinically verified resources, connects patients with similar journeys, and fosters a sense of community. Our efforts also include advocacy and education, such as guiding pediatricians to recognize early signs of genetic conditions and creating policy proposals that push for better public health policies.
Rare Humans of India reflects my passion for combining storytelling with healthcare advocacy, striving to create a world where no one feels alone in their fight against the rare and unknown.
'DNA Diaries' focuses on capturing and sharing the narratives of patients at Apollo Hospitals regarding their experiences with rare genetic disorders. This involves conducting interviews to gather insights into their challenges, advice, and stories, creatinga platform for them to voice their concerns. We aim to educate a wide audience and dispel misconceptions about these conditions while fostering empathy and support networks among patients with similar experiences, by allowing patients to connect with others through our site.
This podcast aims to explore the world of rare genetic disorders and raise public awareness on when to seek medical advice.We dive into the risks of genetic conditions, and offer guidance on prevention and management strategies.Featuring patient stories and expert insights, this podcast helps listeners better understand the complex intersection of genetics, health, and early diagnosis, empowering families to make informed decisions for their wellbeing.
Our advocacy focuses on educating primary care physicians about rare disorders, emphasizing the importance of timely genetic referrals and testing. By weaving patient stories into our presentations, we aim to foster empathy and a deeper understanding of the real-world impact of these conditions on individuals and families.
Highlights of our efforts include:
- The Indian Academy of Pediatrics (IAP) and Apollo-affiliated conference workshop ‘Genetics Workshop for Pediatricians: Integrating Genetics into everyday clinical practice’ attended by 30+ pediatricians
- Apollo's ‘Genetics and Genomics of Cerebral Palsy- New Clinical Dimensions’ attended by 50+ pediatric neurologists, pediatricians, & genetic specialists
- The Federation of Obstetric and Gynecological Societies of India-affiliated seminar on ‘Genetics in Breast Cancer.’ attended by 90+ obstetricians, gynecologists, breast surgeons, & oncologists.
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