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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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
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