New Delhi: In the run up to the World Rare Disease Day 2025 on 28 February, a 20-day awareness campaign for rare diseases was launched by the Ram-Janki Institute Positive Broadcasting House (RJS PBH), led by Founder and National Coordinator Uday Kumar Manna. The event – starting with a webinar on “Urgent need for aRead more
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Rare diseases, though affecting a small percentage of the population, represent a significant public health challenge in India. The Indian Organisation for Rare Diseases (IORD) has been at the forefront of advocating for policies, raising awareness, and improving treatment access. Rare diseases not only lead to the loss of human productivity but also place aRead more
The Union Health & Family Welfare Ministry has officially approved the “National Policy for Rare Diseases 2021” on 30th March 2021. This development comes in the wake of the Delhi High court pulling up the union health ministry and setting a deadline of 30th March 2021 to notify the National Health Policy for Rare DiseasesRead more