In a bid to sensitise the public and seek financial support from the government for the treatment of Gaucher Disease, a rare debilitating genetic disorder, Lysosomal Storage Disorder Support Society (LSDSS) observes September as a month to create awareness on this rare disease. On begin this initiative a silent protest March was organised by LSDSS in New Delhi to mark the Gaucher Disease Awareness Month. About 50 children, some even having difficulty to walk, and their parents holding placards and banners participated in the walk from Tolstoy Marg to Jantar Mantar. They submitted a letter of appeal to the Prime Minister, Union Health minister & Delhi Chief Minister for creating immediately a Corpus Fund & National Health programme for the management of these rare genetic disorders (Lysosomal Storage Disorders) having 500 identified, affected and registered children in India.
EH News Bureau