Thiruvananthapuram: Kerala is preparing to become the first state in India to officially register people affected by rare diseases, opening the way for structured monitoring, follow-up care, and government-level treatment support.
The state will launch the CARE portal — Kerala Against Rare Diseases — on July 1. Once the portal becomes active, details of patients with rare diseases will be registered through government medical colleges, district Early Intervention Centres, and selected private hospitals.
At present, there is no clear data on how many people in the state are living with rare diseases or what specific conditions they have. The new system aims to solve this by creating a proper database for identifying patients, tracking their condition, and ensuring continued medical support.
Patients registered through the portal may also become eligible for treatment assistance of up to ₹50 lakh under the central government scheme. The initiative has been developed with the support of the State Nodal Office of the National Health Mission.
The CARE portal will also be linked with the Health Department’s palliative care portal. This is expected to help patients receive support from local government healthcare centres.
According to State Nodal Officer Dr. U.R. Rahul, the system will help rare disease patients access assistance at the local level through government health institutions.
The registration system is also expected to prevent misuse in the name of rare diseases. Once the portal is active, fundraising or public appeals claiming rare disease treatment needs without proper registration may invite legal action from the Health Department.
Rare diseases are often difficult to diagnose because the number of affected patients is low. Treatment facilities are also limited in many cases. Conditions reported in Kerala include Spinal Muscular Atrophy, Duchenne Muscular Dystrophy, Gaucher disease, Pompe disease, Mucopolysaccharidosis, and Phenylketonuria.
