IORD and RJS launched a 20-day rare disease awareness campaign ahead of World Rare Disease Day 2025, promoting education, advocacy, and public engagement through webinars and outreach initiatives.
Blog
IORD and RJS PBH announce an expert-led webinar on rare diseases, focusing on the urgent need for a unified approach to address challenges in India.
Rare diseases, though affecting a small percentage of the population, represent a significant public health challenge in India. The Indian Organisation for Rare Diseases (IORD) has been at the forefront of advocating for policies, raising awareness, and improving treatment access. Rare diseases not only lead to the loss of human productivity but also place aRead more
The following excerpt is from a presentation delivered by Krishnaji Rao Muthyala, Secretary of the Indian Organization for Rare Diseases (IORD), at the Rare Diseases International (RDI) Membership Meeting held on October 21-22, 2024, in Barcelona, Spain. Barcelona, Spain – There is a need for continued collaboration and innovation to create a more equitable healthcareRead more
The following is an excerpt from a panel discussion on Zee Telugu on Muscular Dystrophy featuring medical experts and members of the BharathMD Foundation, a parent advocacy organization for Muscular Dystrophy. The insights shared during this discussion highlight the importance of awareness, early diagnosis, and access to resources for families navigating the challenges of MuscularRead more
Registration is Now Open for the Rare Diseases Nurses Network Webinar Hosted by the Indian Organisation for Rare Diseases (IORD). It will Highlight the Critical Role Nurses Play in Rare and Undiagnosed Diseases Worldwide. Rare and undiagnosed diseases (RUD) have gained global recognition as a significant health priority following the United Nations (UN) Resolution onRead more
The following excerpt is from a Times Now news story dated July 4, 2024, highlighting the challenges in addressing the unavailability of orphan drugs in India, despite the country’s successful development of COVID vaccines. It features insights from Prof. Ramaiah Muthyala, CEO & President of IORD. Dr Ramaiah Muthyala questions why despite being the pharmacyRead more
The following excerpt is from an Economic Times news story dated June 24, 2024, discussing the policy hurdles affecting the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs meant to treat rareRead more
The Indian Organisation for Rare Diseases is an institutional partner of ICORD. Buenos Aires: The 16th ICORD Annual Meeting, themed “Incentivizing Science and a Comprehensive Program for Rare Diseases,” is set to convene at the esteemed “Aula Magna” in the Faculty of Pharmacy and Biochemistry at the University of Buenos Aires (UBA), located at JunínRead more
In Geneva, Rare Diseases International gained “official relations” status with the World Health Organization at its 155th Executive Board session (June 2024).