Brief Summary: The primary objective of this study is to establish the natural history of Farber disease (acid ceramidase deficiency) through the collection and analysis of retrospective and prospective data...
Instead of picking one target for drug screen, they focused on the symptoms of the disease Using zebrafish, researchers at the Institute of Genomics and Integrative Biology (CSIR-IGIB) have successfully...
HYDERABAD: Telangana medical and health department is sitting on a rare disease policy and is yet to allocate its share for the treatment of rare disorders. According to the rare...
The Institute of Child Health (ICH) and Hospital for Children, Egmore, will soon offer one-stop solution to children with rare genetic diseases such as Lysosomal Storage Disorders (LSD). With the...
Every parent wants to make their child proud, and Aditya Kulkarni and Arun B Papaiah are no different. Only that their daughters – Kulkarni has a two-and-a-half-year-old, and Papaiah’s girls...
Recently, there were reports that some NGOs are bracing up to file a PIL in the Supreme Court to direct the state governments to implement the National Policy for Treatment...
Aarav Sharma is a cheerful little boy who loves to play chess with his parents. When I met the six-year-old, at his home in suburban Mumbai, he was playing with...
Bengaluru: For architect Arun Rajani the world came crashing down 12 years ago when he got to know that his 28-day-old daughter has been diagnosed with Down Syndrome. Reflecting on...
Rare diseases, which are often referred to as orphan diseases, are estimated to have impacted 72-96 million people in India. The Indian government has now put a National Rare Disease...
