This is an excerpt from a research paper titled Expansion of India’s national child healthcare programme, Rashtriya Bal Swasthya Karyakram (RBSK), for rare Disease management: a health policy perspective. This was published in the research journal Orphanet Journal of Rare Diseases. The Rashtriya Bal Swasthya Karyakram (RBSK) is a government program under the National Health Mission (NHM) forRead 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
When the Union Cabinet, chaired by Prime Minister Shri Narendra Modi, approved the National Medical Devices Policy, 2023 on April 26, it came as a shot in the arm for rare disease advocacy Indian Organisation for Rare Diseases (IORD). This policy aims to promote the growth of the medical devices sector in India and achieveRead 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 following is an excerpt from an interview of Dr Ramaiah Muthyala, President and CEO, Indian Organisation for Rare Diseases published by BioSpectrum in its April 2023 edition. It an English language Indian biotech magazine which focuses on topics in the field of pharma, agriculture, bioinformatics including news on corporates involved at the R&D orRead 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
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