The Department of Health has created a comprehensive digital platform to enable identification and tracking of rare diseases across the state. The platform also facilitates referral services and ensures coordinated treatment of rare diseases in the state.
The KARE (Kerala United Against Rare Diseases) portal will help the public health system track families with rare diseases and help coordinate their treatment and long-term follow-up more effectively.
Through its tracking and monitoring services, the portal will take the role of the public health system beyond mere disease diagnosis and ensure comprehensive and timely care for patients with rare diseases.
Although each rare disease affects only a small proportion of the population, these diseases place a significant burden on families and society. Delays in the diagnosis of the disease, high costs of care and lack of effective and appropriate treatment are problems faced by patients’ families. A unified digital register of people with rare diseases was created precisely for the purpose of a more systematic and effective solution to these problems.
The portal will function as a centralized digital platform for registration of persons with rare diseases and persons suspected of rare diseases. It will also monitor their treatment and follow-up and establish links with various treatment centers and specialists.
By bringing together patient information from across the country into a single digital platform, the care and support of patients with rare diseases can be managed more effectively.
One of the key objectives of the portal would be early identification and scientific monitoring of new rare diseases across the state. Once it is identified as a rare disease, patients can be referred without delay to appropriate treatment centers for expert care.
Collection of data through the KARE portal will also help the state assess the true prevalence of rare diseases and identify rare diseases specific to Kerala that may not feature in the national rare disease list. The data would be invaluable to policy makers in designing interventions to manage the burden of rare diseases in the state.
District early intervention centers have also been linked to the portal, so patients can be assigned to comprehensive care without delay – from early detection to long-term support and palliative care.
Kerala has rolled out its KARE initiative in 2024 to provide comprehensive care to people with rare diseases. More than 200 children are offered free treatment and related services under the program.
Published – 13 March 2026 20:56 IST
