The Delhi High Court on Monday sought the Centre and AAP government’s stand on two girls’ pleas claiming that the National Policy for Treatment of Rare Diseases discriminates against patients above the poverty line (APL). Justice...
New Delhi [India]: A Public Interest Litigation (PIL) has been filed in the Supreme Court against the Centre and state governments for “failing to constitute a state-level technical-cum-administrative committee, and to identify designated hospitals for treatment of people...
27thSeptember 2018, Bangalore: In the run up to International Gaucher Dayto be commemorated on 1st October, the Centre for Human Genetics (CHG)together with Organization for Rare Diseases India (ORDI), organised...
Telangana state has not even given data on the incidence of these diseases to the Centre. Hyderabad: Despite the sanction of a corpus of Rs 100 crore for the treatment of...
The Delhi High Court on Monday sought the Centre and AAP government’s stand on two girls’ pleas claiming that the National Policy for Treatment of Rare Diseases discriminates against patients above the poverty line (APL). Justice...
Pompe disease is a rare and potentially fatal metabolic myopathy (prevalence 1 in 20,000). In Pompe disease, the deficiency of lysosomal acid α-glucosidase (GAA) leads to accumulation of lysosomal glycogen...
Rare Pediatric Disease Designation Granted to Stargardt Disease Treatment, LBS-008 The US Food and Drug Administration (FDA) has granted a rare pediatric disease designation to Lin BioScience’s LBS-008 for...
Doctors found out that hypertension was not the only affliction that was troubling Suresh. They found that when they checked the blood pressure on the right hand it was normal,...
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...
Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.
