KARE Portal to monitor rare diseases in Kerala

The Health department has set up a comprehensive digital platform to enable the 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 keep track of families with rare diseases and help coordinate their treatment and long-term follow-up in a more efficient manner.

The portal, through its tracking and monitoring services, will take the public health system’s role beyond mere disease diagnosis and ensure that patients with rare diseases are taken care of in a comprehensive and timely manner.

Although each rare disease affects only a small proportion of the population, these diseases impose a significant burden on families and society. Delay in diagnosing the disease, the high cost of care and the lack of effective and appropriate treatment are issues that patients’ families face. It is to tackle these issues in a more systematic and efficient manner that a unified digital registry of persons with rare diseases has been set up.

The portal will function as a centralised digital platform for the registration of persons with rare diseases as well as those suspected to be having rare diseases. It will also monitor their treatment and follow-up, establishing referral links with various treatment centres and experts.

By collating patient information from across the State into a single digital platform, the care and support of those with rare diseases can be managed more efficiently.

One of the key objectives of the portal would be the early identification and scientific tracking of new rare diseases across the State. Once identified to be a rare disease, patients can be directed to appropriate treatment centres without delay, for expert care.

The data collection through the KARE portal will also help the State assess the actual prevalence of a rare diseases and identify rare diseases specific to Kerala, which may not figure in the national list of rare diseases. The data would be invaluable for policy makers to design interventions to manage the rare diseases burden in the State.

District Early Intervention Centres have also been linked to the portal, so that patients can be put on the comprehensive care pathway — from early detection to long-term support and palliative care — without delays.

Kerala drew up its KARE initiative in 2024 to ensure the comprehensive care of persons with rare diseases. More than 200 children are being offered free treatment and allied services under the scheme .