Conference in Hyderabad Raises Awareness for Rare Eye Diseases

Hyderabad hosted a significant conference focusing on rare eye disorders, organized by the Indian Organisation for Rare Diseases (IORD) in partnership with the LV Prasad Eye Institute (LVPEI) and Rainbow Children’s Hospital. The event took place on February 28, 2026, coinciding with World Rare Disease Day, under the title “Raise the Awareness – Rare Diseases.”

This conference aimed to shed light on the challenges faced in diagnosing and treating rare eye conditions in India. Attendees included medical professionals, researchers, and advocates dedicated to improving awareness and understanding of these conditions. A key highlight was the release of the IORD Annual Report 2025, which provides insights into the current landscape of rare diseases in the country.

A screening of the short film “I am not Alone,” directed by Muralidhar Indrakanti, further emphasized the importance of awareness. The film addresses the emotional and social aspects of living with rare diseases, offering a platform for patient voices to be heard.

During the conference, Prof. Ramaiah Muthyala, President and CEO of IORD, emphasized the significant public health challenge posed by rare diseases in India. He stated, “Rare diseases represent a significant yet under-recognised public health challenge in India.” Prof. Muthyala pointed out that the country’s large population contributes to the high number of patients with rare conditions, reflecting sheer volume rather than an increased frequency of disease.

The discussions at the conference highlighted critical gaps in diagnosis, genetic services, and comprehensive care for individuals affected by rare eye disorders. Experts called for improved collaboration among healthcare providers, researchers, and policymakers to ensure that patients receive timely and effective treatment.

As the conference concluded, participants expressed optimism that increased awareness could lead to better resources and support for those living with rare diseases. The commitment shown by organizations like IORD and LVPEI underscores the need for ongoing dialogue and initiatives aimed at addressing the complexities surrounding rare health conditions in India.

The engagement of the community and the support from medical professionals are crucial in driving forward the necessary changes. Events like this conference play an essential role in fostering a deeper understanding of rare diseases and improving outcomes for patients across the nation.