The Delhi High Court has introduced a landmark Standard Protocol to streamline rare disease management, ensuring continuous availability of therapies, local drug manufacturing, and time-bound treatment delivery.
Blog
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
Join an expert-led webinar exploring the complexities of rare diseases, featuring insights from IORD CEO & President Prof. Ramaiah Muthyala Rare diseases are a pressing global health issue, with an estimated 7,000 to 8,000 rare diseases identified worldwide. These conditions affect a relatively small percentage of the population, making awareness, diagnosis, and treatment especially challenging.Read 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 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
Rare Disease Epidemic: 90 million Indians among 300 million globally affected with no cure in sight! Non-profit Indian Organization for Rare Diseases (IORD) Hosts Conference on Rare Disease Awareness with Experts Conference held at IMA Building, Khammam at 9:30 AM on March 3 (Sunday) Khammam: The Indian Organization for Rare Diseases (IORD), a not-for-profit nationalRead more
Registrations are now open for the 12th European Conference on Rare Diseases & Orphan Products (ECRD), scheduled to take place on May 15-16, 2024, at The Square venue in Brussels. Said to be one the largest patient-led events in the rare disease field, the hybrid conference would facilitate collaborative dialogue, learning, and conversation. It servesRead more
The Union Health Ministry has designated Bhopal AIIMS as a Centre of Excellence (CoE) for treating rare diseases, making it the 12th such hospital in the country under the Rare Disease Policy 2021. The decision was formally taken by the Rare Disease Cell, Union Ministry of Health & Family Welfare (MoHFW), dated November 6, 2023,Read more
It is with pride that the Indian Organization for Rare Diseases (IORD) observes this welcome development. The entry of Indian pharmaceutical companies into the manufacturing of rare drugs is the result of years of sustained advocacy by IORD and others.