The following is an excerpt from a three-part interview series featuring IORD CEO & President Prof. Ramaiah Muthyala. In this segment, he speaks with Health Issues India about the pressing need to raise rare disease awareness across India and offers key recommendations to improve early diagnosis, train frontline healthcare workers, and integrate rare diseases intoRead more
Blog
Kakatiya Medical College (KMC), Warangal, made a proud mark at the Annual UG Medical Research Conference held on May 5, 2025, at the prestigious Armed Forces Medical College (AFMC) -Illuminati Conference – in Pune. A seven-member team of final-year MBBS students presented their in-depth research titled “Dual Perspectives on Rare Diseases: An Analysis of DiagnosticRead more
Prof. Ramaiah Muthyala discussed challenges and solutions for rare disease access at the 2025 World Orphan Drug Congress in Boston. He highlighted the global economic burden of rare diseases and the unique barriers in low- and middle-income countries. Efforts in India to reduce orphan drug costs, including the availability of Hydroxyurea for sickle cell diseaseRead more
The following is the transcript of the address delivered by Prof. (Dr.) Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases (IORD), Professor & Director, University of Minnesota, USA on the theme “Healthy Beginnings, Hopeful Futures: Rare Diseases and the Global Call to Action”, presented during the 342nd International Webinar organized by RJS PBHRead more
Vijayawada: The Indian Organization for Rare Diseases (IORD), a non-profit advocacy body, convened a critical conference titled “RAISE THE AWARENESS – RARE DISEASES: Advocate Public Policy, Promote Diagnosis, Treatment & Social Services” at Fortune Murali Park, Vijayawada on February 28, to mark World Rare Disease Day 2025. The event, attended by healthcare experts, policymakers,Read more
This is a transcribed speech of Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala delivered at the World Rare Disease Day 2025 conference in Vijayawada, organized by the IORD. Check the full video here. Today, while India celebrates National Science Day, the world celebrates Rare Diseases Day. Both are important,Read more
This is a transcribed speech of Sri M.T. Krishna Babu, IAS, Special Chief Secretary, Health Medical & Family Welfare, Govt. of Andhra Pradesh highlighting need for Strengthening Rare Disease Care in Andhra Pradesh. He delivered this speech at the World Rare Disease Day 2025 conference, organized by the Indian Organisation for Rare Diseases in Vijayawada,Read more
Manufacturing Drugs for Selected Rare Diseases: Dr Vinod K Paul This is a transcribed speech of Dr. Vinod K. Paul, Member of the National Institution for Transforming India (NITI) Aayog, on “Manufacturing Drugs for Selected Rare Diseases.” He delivered this speech at the World Rare Disease Day 2025 conference, organized by the Indian Organisation forRead more
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
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