KARe project, a crucial step in rare disease treatment
The Health Department has initiated the KARe (Kerala United Against Rare Diseases) project for the care of rare diseases. This is a crucial step for Kerala in the field of rare disease treatment. KARe is a comprehensive care plan that includes services such as prevention, early detection of diseases, availability of treatments in situations where they are available, availability of possible therapies, technological aids, home-centered services, and psychosocial support for parents.
According to the World Health Organization, there are more than five thousand rare diseases. Rare diseases are diseases that affect an average of one to six people out of ten thousand. As per the National Rare Disease Policy 2021, 11 centers have been recognized as Centers of Excellence at the national level. One of these centers is SAT Hospital, which has been selected as a Center of Excellence for Rare Diseases. The Center has allocated Rs 3 crore for this. As per the central policy, the center can provide treatment up to a maximum of Rs 50 lakh per patient. But as this amount is not sufficient for the current treatments of many diseases, a comprehensive care plan for rare disease care is being launched in the state. Funding for the care project is done through CSR fund and crowdfunding. Currently, a scheme to provide expensive drugs for rare diseases and a scheme to provide drugs for lysosomal storage diseases are being implemented in the state.
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