Representing the APS Type 1 Foundation, Board Member Pushpa Rao exhibited a poster on APS Type 1 at the Indo-US Bridging Rare Summit in Delhi, India, seeking to expand the network, include more patients of Indian origin in our APS Type 1 (APECED) Registry, and inspire research that benefits all.
Over two and a half days in November, the Indo-US Bridging Rare Summit brought together local researchers, clinicians, thought leaders, government representatives, and patient advocacy groups, alongside representatives from the United States, to discuss rare disease research, emerging treatments, and accessibility. While some U.S. representatives, such as Dr. Peter Marks from the U.S. FDA CBER (Center for Biologics Evaluation and Research), attended virtually, others participated in person, including representatives from the Sickle Cell/Thalassemia Patients Network (SCTPN), Rare Disease Diversity Coalition, RareGivers™, and the International Rare Diseases Research Consortium (IRDiRC). The summit aimed to foster information sharing, collaboration, and network-building to benefit rare disease communities in both India and the U.S.
Early in the summit, it became evident that, similar to the U.S., the Indian government has placed a new focus on rare diseases. Statistics revealed that due to cultural and religious factors, over 450 rare diseases affect 80–100 million people in India—approximately one in ten individuals. However, APS Type 1 has only recently been identified in India, with the first papers published in 2017 and 2021. Increasing awareness and sharing information are crucial to advancing medical research on the various mutations and symptom presentations of this condition.
Representing the APS Type 1 Foundation, Board Member Pushpa Rao exhibited a poster on APS Type 1 to engage attendees. This initiative seeks to expand the Foundation’s network, include more patients of Indian origin in our APS Type 1 (APECED) Registry, and contribute to research that benefits the global community.
Indian National Academy of Sciences – Conference Venue