Rare Disease (RD) is defined by the World Health Organisation (WHO) as an often debilitating, lifelong disease or disorder with a prevalence of 1 or less per 1,000 population. However,...
Ahead of the Assembly elections scheduled for May 10, 2023, the Organisation of Rare Diseases of India (ORDI) has called upon the political parties in Karnataka to include support for...
Ever heard of Congenital Central Hypoventilation Syndrome (CCHS)? This is a rare breathing disorder in which the person’s ability to breathe is compromised. The disease is life threatening as it...
In 2022, Novartis invested around $10 billion in overall research and development (R&D) and has already secured 23 approvals in the United States, European Union, China and Japan for new...
The Union Health Ministry has recently included six rare diseases into various groups of disorders under the National Policy for Rare Diseases (NPRD), 2021, enabling the patients of these diseases...
Issuing notice to Centre and AIIMS, the matter has been listed by the Delhi High Court for hearing with other connected matters on April 13. In the latest development, the...
Globally as well as in India, rare or orphan diseases as they are also known, pose a significant threat not just to the public health system but also to the...
Amicus FOLD announced that the European Commission approved cipaglucosidase alfa, commercialized under the brand name Pombiliti, for treating late-onset Pompe disease (LOPD) in adults. Cipaglucosidase alfa is a long-term enzyme replacement...
