Join us to be the voice of 300 million affected people worldwide on World Rare Disease Day-2023. The not-for-profit Indian Organization for Rare Diseases (IORD) is excited to invite you all to an awareness bikeathon and walkathon being organised at the Necklace Road, Hyderabad on 26th February at 6.30 AM on Sunday. Please register forRead more
Blog
In a first of its kind comprehensive plan for management of any rare disease in India, the Union Finance minister Nirmala Sitharaman in her Budget 2023 presentation announced that the government would work on a mission mode for the elimination of the rare Sickle Cell Disease (SCD) from India by 2047. For this project, sheRead more
The Union Health Ministry has designated Kerala’s Sree Avittam Thirunal Hospital (SAT) hospital, Government Medical College, Thiruvananthapuram, as a centre of excellence (CoE) for treating rare diseases, making it the 11th such hospital in the country under the Rare Disease Policy 2021. The decision was formally taken by the Rare Disease Cell, Union Ministry of HealthRead more
The court direction – given on 22 December 2022 – came following a batch of petitions filed by parents of children suffering from rare diseases such as DMD and hunter syndrome. In a relief for scores of rare disease patients suffering from Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome) patients,Read 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 United States Federal Drug Administration (FDA) has approved a new gene therapy treatment for a rare blood clotting disease called Hemophilia B. The drug Hemgenix costs US$ 3.5mn (Rs 28.52 Crore). Until now, the world’s costliest drug was Zolgensma – a drug for gene therapy used to treat children below two years diagnosed withRead more
Khammam: In a unique initiative to identify and count rare disease populations as part of a pilot study in Telangana, the Indian Organization for Rare Diseases (IORD) has started sensitization and interactive awareness meets with health workers in the Khammam district of Telangana. The pilot study – supported by Telangana state health commissioner Dr Sweta MohantyRead more
Telangana: In the run-up to the implementation of the ground-breaking proposal to count rare disease patients within Telangana state, the Indian Organization for Rare Diseases (IORD) organised an awareness event on Rare Diseases for health workers including Accredited Social Health Activist (ASHA) members at Kamepally village in Khammam, Telangana on 10 November 2022. While addressing theRead more
(This is an abridged version of the presentation delivered by Dr P. Harihara Murthy, MBBS, MS, DLO, Sr. Consultant E.N. T., Head & Neck Surgeon & Anthroposophic Physician, Swasthya Niketan, Koramangala Bangalore, Murthy Health & Research Centre, Koramangala, Bangalore & Apollo Spectra Hospital, Koramangala, Bangalore at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare DiseasesRead more
(This is an abridged version of the presentation delivered by Dr Kameshwar Rao, Executive Director, National Health Authority at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ organized by IORD at Hyderabad on 25th June.) Rare Diseases in Numbers: The World Health Organisation (WHO) estimates that there are an averageRead more