Celebrating Resilience and Advocacy in the Rare Disease Community
For members of the inherited retinal disease (IRD) and broader rare disease communities, recognition of patient resilience, advocacy, and medical contributions serves as a powerful reminder of collective strength. Events that bring visibility to rare conditions help highlight the unique journeys and systemic challenges faced by individuals and families navigating uncommon health diagnoses.
According to reports from The Hindu, the Organisation for Rare Diseases India (ORDI) hosted its third annual Rare Star Awards 2026 in Bengaluru. The event celebrated patients, caregivers, medical professionals, researchers, and advocacy groups for their exceptional contributions to the rare disease sector.
Honoring Leaders Across Categories
Among the honorees were individuals recognized as role models living with rare diseases across various age groups, including Vishaka B, Balajepalli Kavya Poornima, and Ruchi Pratap. Kalamma received the caregiver award, while Vykuntaraju K.N. was recognized for excellence in medical care. Additional awards were presented to Anshu Mishra for volunteering, Dr. Sheetal Ramesh Mhamunkar for rare disease research, and Seba P.A. for leadership in advocacy.
The ALS Care and Support Foundation was honored for patient advocacy, Nadir Aman was recognized as a genetic counselor, Peptris was acknowledged in the health innovation start-up category, and Pharmed received the CSR Partner Rare Award. Winners were selected by a national jury from nominations across the country.
Shifting Focus to Systemic Challenges
Beyond celebrating individual achievements, the gathering drew attention to the broader obstacles faced by an estimated 70 million people living with rare diseases in India. Speakers and participants emphasized persistent hurdles such as delayed diagnoses, limited treatment access, high out-of-pocket medical expenses, and the critical need for enhanced policy and healthcare support systems.
As advocacy efforts continue to grow globally and regionally, events like the Rare Star Awards underscore the vital role that community support, medical research, and inclusive design play in shaping a more accessible future for everyone affected by rare conditions.