Registration is now open for World Rare Disease Day-2025 Conference, organized by the Indian Organisation for Rare Diseases (IORD) at FORTUNE Murali Park, Vijayawada in Andhra Pradesh on 28 February, 2025. This significant event aims to advance healthcare innovation, address rare diseases, and strengthen collaborative efforts in public health. To register for the conference, pleaseRead more
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New Delhi: In the run up to the World Rare Disease Day 2025 on 28 February, a 20-day awareness campaign for rare diseases was launched by the Ram-Janki Institute Positive Broadcasting House (RJS PBH), led by Founder and National Coordinator Uday Kumar Manna. The event – starting with a webinar on “Urgent need for aRead more
The following is reproduced from an editorial article by Kamal Pratap Singh published in Biotech Express on page 8 in November 2024 based on the webinar ‘The Global Burden of Rare Diseases: Issues and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter. In a ground-breaking webinar hostedRead more
In a landmark ruling, the Delhi High Court ordered the creation of a ₹974 crore National Fund for Rare Diseases for 2024–26, emphasizing patient-centric policies, expanded treatment access, and funding reforms.
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.
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
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 following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. HYDERABAD: Though India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs for rare diseases, patients backRead more