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LSDSS Demands Corpus Fund for Diagnosis and Treatment of Rare Disease

Lysosomal Storage Disorders Support Society (LSDSS) has asked the state government to create corpus fund from the annual state budget for better diagnosis and treatment of rare diseases.

LSDSS president Manjit Singh on the International Gaucher Day organised an awareness programme at JK Lon Hospital in Jaipur on Monday. Parents with their children suffering from rare diseases along with JK Lon hospital superintendent Dr Ashok Gupta and Dr Lalit Bharadia, paediatric gastroenterologist from a private hospital, were present.

Gaucher disease is one of the most common LSDs and is a very serious condition wherein people lack an important enzyme which is responsible for breaking down a specific type of fat molecule. Enzyme replacement therapy (ERT) is required every fortnight. It is a very expensive treatment and many are unable to afford it.

Elaborating on the need for government intervention, LSDSS president said Gaucher can be a life threatening condition if is not treated on time. There are around 26 children in Rajasthan who have been diagnosed with Gaucher and it is important that they receive proper treatment timely.

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