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
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The following is an excerpt from a news story on IORD’s World Rare Disease Day-2024 event published in Telangana Today newspaper. Khammam: Everyone, regardless of their health condition deserves access to quality healthcare and support, especially those suffering from rare diseases, stated Indian Organisation for Rare Diseases (IORD) president Prof. Ramaiah Muthyala. He addressed a gatheringRead 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
The 100-day countdown for the World Rare Disease Day-2023 celebration, which falls on February 28, has started with the right earnestness. This year, for creating awareness among the people, short multi-lingual animation videos in several world languages with subtitles were launched for easy understanding for the local population. They include Indian languages like Hindi, Bengali,Read more
The Indian Organization for Rare Diseases (IORD) – a not-for-profit umbrella organisation – hosted a webinar on ‘Rare Diseases: Prevention’ with top global speakers on February 2, 2021. The topic assumes significance, as the estimated rare diseases population in India is about 90 million. Irrespective of what definition we use for rare diseases, more thanRead more
Source: Vaartha https://www.vaartha.com/telangana/ts-minister-etala-rajender-attends-world-rare-disease-day-event/Read more
Hyderabad: As much as 90 per cent of patients affected with rare diseases are from middle class, said Eatala Rajender, the Health Minister of Telangana, at the one-day conference on rare diseases here on Friday. The minister also said that the government had formulated a policy for ‘rare diseases’ and that there was a needRead more
Telangana State Health Minister Eatela Rajender Attends World Rare Disease Day 2020 in Hyderabad Source: Eenadu https://www.eenadu.net/latestnews/Etela-Speech-at-public-gardens-hyderabad/1600/120028427Read more
World Rare Disease Day was observed on Friday, here at Hyderabad Millions of people around the world observe Rare Disease Day on the last day of February. “Some rare diseases, such as cystic fibrosis, thalassemia, hemophilia, and Lou Gehrig’s disease ( ALS ), are well known to the public. India has already taken steps toRead more