'Rare disease patients yet to get free medical treatment'

'Rare disease patients yet to get free medical treatment'

Lysosomal Storage Disorders Support Society (LSDSS) members on Saturday expressed disappointment over the delay in providing free treatment to LSD patients registered at Indira Gandhi Institute of Child Health (IGICH).

President, LSD Support Society, Manjit Singh said the delay was hampering the patients’ health and violating the Karnataka High Court order.

He added: “Though almost two months have passed since the high court directive and over a month since the transfer of the money to initiate free treatment for rare disease (LSD) patients at IGICH, over 40 hapless children and their families are still waiting for treatment to start. Meanwhile, one innocent child named Chetan has already lost his life to a rare disorder, Gaucher's disease.”

The members requested IGICH authorities to start treatment of these children without any further delay. They added that, in addition, the funding needs to be enhanced and made available on a regular basis to cover the cost of treatment for all patients needing the enzyme replacement therapy, from the government.

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