The Indo-US Bridging RARE summit 2024 was held from November 16 to 18, featuring prominent speakers from both nations who engaged in discussions on significant issues such as rare diseases, orphan drug clinical trials, and the principles of diversity, equity, and inclusion in the development of orphan drugs. Organized by the Indo-US Organization for Rare Diseases in collaboration with the All-India Institute of Medical Sciences in New Delhi, the summit addressed a range of topics, including cross-border patient engagement, the digitization of rare diseases, the intricacies of orphan drug clinical trials, and the regulatory frameworks governing orphan drugs.
The primary objective of the summit was to elevate the visibility and treatment of rare diseases, which, despite affecting millions globally, often leave patients feeling isolated and uncertain about their conditions. The discussions centered on transforming this sense of isolation into a more inclusive approach, emphasizing the need for international collaboration. By leveraging shared resources and expertise, the summit sought to expedite the development of treatments and cures that could enhance the quality of life for individuals worldwide. A significant outcome of the event was the identification and promotion of 12 Centers of Excellence for rare diseases throughout India, along with the establishment of five Nidan Kendras dedicated to genetic testing and counseling. A crucial insight from the summit was the necessity of connecting patients and their families, underscoring the potential of India’s genetically diverse population as a critical asset in understanding rare diseases and formulating targeted therapies. Engaging patients from various regions and backgrounds positions India to make a substantial contribution to a more comprehensive global health database.
