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State works towards treating children with rare genetic disorders
Posted on: 03/Feb/2016 11:48:06 AM
Tamil Nadu is making efforts to provide free treatment for children who suffer from rare genetic disorders. The country`s first birth defects registry was launched in the State three years ago.
An enzyme replacement therapy was recently recommended for a 4 year old suffering from Hurler Syndrome. The recommendation was made by a medical board constituted by the Institute of Child Health. This is an expensive method that replaces an enzyme that is deficient or absent. Hurler Syndrome results in enlargement of the heart, weakness of heart muscles, growth retardation and coarse facial features.
Says an activist, Only six of the 45 disorders (lysosomal storage disorders or LSDs) are treatable, but families are unable to access even those because of affordability issues. We are grateful to the state for having taken the first steps in recognising the challenges faced by patients with LSDs . The next step is for the government to invest in facilities that enable early detection and to increase budgetary allocation to support children and their families.
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