Hyderabad Hosts Rare Disease Conference Spotlighting Gaps in Eye Care and Diagnosis
A scientific conference on rare eye disorders was organised in Hyderabad to mark World Rare Disease Day 2026, bringing together medical experts and healthcare organisations to highlight the urgent need for improved diagnosis and care.
The event was hosted by the Indian Organisation for Rare Diseases (IORD) in collaboration with LV Prasad Eye Institute (LVPEI) and Rainbow Children’s Hospital. Titled “Raise the Awareness – Rare Diseases”, the conference focused particularly on rare diseases affecting the eyes.
During the programme, IORD released its Annual Report 2025 and screened a short awareness film, “I Am Not Alone”, directed by filmmaker Muralidhar Indrakanti. The discussions underscored significant gaps in early diagnosis, limited access to genetic testing services, and the need for comprehensive, multidisciplinary care for patients with rare ophthalmic conditions.
Speaking at the conference, Prof. Ramaiah Muthyala, President and CEO of IORD, described rare diseases as a major yet under-recognised public health concern in India. He emphasised that while India has a high number of rare disease patients, this is largely due to its vast population size rather than a disproportionately higher disease prevalence.
Experts at the event called for greater awareness, stronger policy support, improved genetic counselling services, and enhanced collaboration among healthcare providers to ensure timely diagnosis and better outcomes for individuals living with rare eye disorders.
