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For Kota-based vegetable vendor and kirana store owner, Mohamad Rafiq, life delivered a nasty punch not once but twice. His first born, a girl by the name of Parveen Nisha, was born with a rare genetic disease called Gaucher’s disease. In this metabolic disease, the patient is born without an enzyme which is responsible for breakdown of fat. In its absence the fat starts accumulating in the liver and spleen, making them grow in size. The child starts to look like a pregnant woman. Parveen could be diagnosed only by the time she turned one-and-a-half and she didn’t survive beyond her 5th birthday because her poor parents couldn’t afford the treatment that costs about Rs 1 crore per year and is life-long. Rafiq’s second born, a son, suffers from the same disease. Now, 4, Rafiq’s son benefitted from free treatment provided by a pharma company for about six months. But his future is uncertain. While the Jaipur high court has ordered a local hospital to foot the bill of his

Rashtriya arogya nidhiPrasanna shirolMuhammed asheelParveen nishaMohamad rafiqAshok guptaUnion ministry of health family welfareOrganisation of rare diseases indiaNational policy on rare diseasesRare diseases centreFor kota basedNational policyRare diseasesUnion ministryFamily welfareRare diseases india