In new buildings with equipment worth Rs 30 crore, the state health department will soon set up a unit for rare diseases at the Institute of Child Health (ICH) and a genetic lab at the Government General Hospital to help in the early diagnosis of such diseases.
On occasion of the International Day for Rare Diseases health secretary VK Subburaj said, “The ICH will have experts trained to treat certain rare metabolic, genetic, blood and chromosomal disorders, on the experts will also generate research material to drive patient-friendly policies for people living with such disorders”.
"Tamil Nadu could be a role model among the states in health care but we must admit that when it comes to dealing with rare diseases, we are yet to make a beginning. Our patients are forced to go to neighbouring states or abroad even for diagnosis," Subburaj added.
About Suyog :
Suyog was one of those with Gaucher`s disease, a genetic condition in which a fatty substance accumulates in cells and certain organs. It is caused by a hereditary deficiency of an enzyme. At the age of three, Suyog was diagnosed with anemia.
Several children with rare disorders and their parents came with a list of demands, including appeals for free treatment and subsidy for expensive life-saving drugs.
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