Tag: Pompe
From delayed diagnosis to lack of funds: India’s shaky rare disease...
India does not have a healthcare policy for Rare Diseases in place, and whatever little benefits exist are only applicable for BPL Families, writes, Prasanna Shirol, Founder Director, ORDI.....................
Gaucher Awareness Day commemorated in New Delhi
The event was also a platform to bring patients and families together to raise their collective voice to seek treatment from the central government......................
Pompe patients in Kerala awaiting treatment despite judicial intervention
Despite the judicial intervention, the government has not initiated the interim treatment and this has led to the funds being lapsed, leaving the patients in dismay.................