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Kerala's New Digital Platform for Rare Disease Care
13 Mar
Summary
- A digital platform tracks and coordinates rare disease treatment.
- The KARE portal aids families with rare diseases for efficient care.
- The initiative aims for early identification and scientific tracking of diseases.
Kerala's Health Department has introduced a comprehensive digital platform to facilitate the identification and tracking of rare diseases, ensuring coordinated treatment for affected individuals. Launched in 2024, the KARE (Kerala United Against Rare Diseases) portal aims to streamline public health system efforts in managing rare diseases.
The KARE portal functions as a centralized digital registry for individuals with confirmed or suspected rare diseases. It will monitor their treatment and follow-up, establishing essential referral links with various treatment centers and experts. This system is designed to address challenges like diagnostic delays and high treatment costs faced by patient families.
The initiative also focuses on the early identification and scientific tracking of new rare diseases within the state. By collating patient information, Kerala seeks to assess the actual prevalence of rare diseases and identify those specific to the region. District Early Intervention Centers are integrated into the portal to ensure a complete care pathway.
More than 200 children are currently receiving free treatment and allied services under the KARE initiative, which aims to provide comprehensive care for persons with rare diseases from early detection through to long-term support and palliative care.
