Kerala Against Rare Diseases (KARE), the State’s initiative to devise a comprehensive care strategy to prevent and manage rare diseases, is a decisive step to go beyond mere care to look at rare diseases in a holistic manner, Chief Minister Pinarayi Vijayan said.
KARE envisages prevention and early detection of rare diseases, making the latest technology/therapy available to individuals, ensure home-based care and psychosocial support for parents and caregivers.
Mr. Vijayan was formally launching KARE and inaugurating the new urban popular health centres and isolation wards being set up across the State at a function here on Friday.
The World Health Organization (WHO) estimates that globally, there are over 5,000 rare diseases. Under the National Rare Diseases Policy, 11 centres in the country, including SAT Hospital in the capital, have been accepted as the Centres of Excellence(CoE) to manage rare diseases. Though the Centre has made a grant of ₹3 crore for the CoE, the amount is hardly enough as management of rare diseases can be very expensive.
It is under these circumstances that the State has decided to formulate a comprehensive care strategy for managing rare diseases.
Speaking on the occasion, Health Minister, Veena George, appealed to the public to support this initiative of the Government so that none are left out
The Government intends to find funds for the treatment of rare diseases through crowd funding and CSR funding and offer a helping hand to those suffering from it. KARE is a major challenge that the State is taking up, Ms. George said.
The Chief Minister also inaugurated the 42 new urban popular health centres, which will provide free and comprehensive care to people in urban areas. Apart from the existing 102 urban family health centres, 380 urban popular health centres will be opened across the State.
Isolation wards are being set up in all Assembly constituencies, of which 37 were inaugurated on Friday. This is a ₹250-crore project, of which 50% of the funds will be generated via Kerala Infrastructure Investment Fund Board (KIIFB) and the rest through the development funds of MLAs.
Antony Raju, MLA, Mayor Arya Rajendran, principal secretary (Health) APM Mohammed Hanish, NHM State mission director Jeevan Babu, the Director of Health Services K.J. Reena, and senior Health officials were present.
