The Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) for 5 years, empowering it with a broader mandate to strengthen rare disease management in India.
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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
Reproduced below is the letter written to Prime Minister Shri Narendra Modi ji by IORD requesting for inclusion of World Rare Disease Day as a topic in the upcoming Mann Ki Baat Dear Shri Narendra Modi ji Sir, Sub: Request Prime Minister Shri Narendra Modi Ji to speak to the nation on the occasion ofRead more
With the idea of raising awareness for people living with a rare disease, an official video marking the World Rare Disease Day-2022 falling on February 28 was globally launched on January 31. The awareness campaign is jointly supported by 67 National Alliance patient organisations from across 59 countries including the Indian Organisation for Rare DiseasesRead more