THIRUVANANATHAPURAM: Chief Minister Pinarayi Vijayan on Friday said that KARe – Kerala Against Rare Diseases – programme will be a crucial step for the state in the field of rare disease treatment.
“The state government is trying to prepare a comprehensive care plan to prevent rare diseases, detect them early, provide available treatment, therapies and assistive technology devices, ensure home-centred services and psychological and social support for parents” said Pinarayi.
He was speaking after inaugurating the KARe project at the Tagore Theatre in Thiruvananthapuram. He also inaugurated 42 urban public health centres and 37 isolation wards at the state level.
According to the World Health Organisation, there are over 5,000 rare diseases. Rare diseases are those diseases that affect an average of one to six people out of ten thousand. As per the National Rare Disease Policy 2021, 11 centres have been recognised as Centres of Excellence at the national level. One of these centres is SAT Hospital. The Centre has allocated `3 crore for this.
“As per the policy of the Central government, it can only provide treatment up to a maximum of `50 lakh per patient. But the reality is that this amount is not sufficient for the current treatment of many diseases. In this context, the state government is aiming for a comprehensive policy formulation for rare disease care,” said the chief minister. Health Minister Veena George said that the government has taken up a big challenge. According to her, the funds for the project will be through the CSR fund and crowdfunding.