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The registry of persons with rare diseases in the State will become a reality this year, Health Minister Veena George said.
Inaugurating a workshop on Rare Diseases here on Friday, she said that the State was trying its best to give a new lease of life to children with rare diseases through various initiatives. Among the children withSpinal muscular atrophy (SMA) who were being provided free medicines by the State, the survival rate was 90%, she added.
A Rare Diseases clinic will start functioning at Kozhikode this year, she said.
The State is currently screening infants for congenital anomalies under the programme Shalabham so that many conditions can be identified and treated early. The State initiative CARE was started early last year.
About 106 children are being provided enzyme replacement therapy free of cost, while close to 8,000 children have been provided free correctional heart surgeries under the Hridyam initiative.
Rajan Khobragade, Additional Chief Secretary (Health); K.J. Reena, Director of Health Services; V.H. Shanker, nodal officer for the Centre of Excellence for Rare Diseases, SAT Hospital, among others, were present
Published – January 25, 2025 12:24 am IST
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IThe Hindu
