The coordination among the 11 Centres of Excellence (CoE) for Rare Diseases and their communication with the Ministry of Health and Family Welfare’s technical committee appears to be significantly inadequate and slow, resulting in hassles for rare disease patients. In a heart-wrenching case, Kanna Rudraksh, a seven-month-old baby suffering from Pompe disease (a rare lysosomalRead more
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In a significant development for the entire rare disease community and stakeholders in India, the Delhi High Court has ordered steps for implementing the National Rare Disease Policy, 2021 formulated by the Central Government. Justice Prathiba M Singh, on May 15, directed the formation of a five-member committee to oversee the implementation of the policyRead more
The following is an excerpt from an interview conducted by Pharma Intelligence with Prof Ramaiah Muthyala, President & CEO of Indian Organization for Rare Diseases (IORD), on central government’s exemption of customs duty on imported drugs and food items recommended for special medical purposes to treat rare diseases. You can read the complete story writtenRead more
The government has waived basic customs duty on drugs and food items prescribed for special medical purposes that are imported for the treatment of rare diseases listed under National Policy for Rare Diseases, 2021.
The youngest Bikeathon participant was Korukonda lyosha, aged only eight years, while the oldest walkathon participant was Subhash Pande, aged 76 years at IORD’s Bikeathon │ Walkathon │ For Rare
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
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