The Kerala government is planning to devise a State-level policy, a first-of-its kind initiative, for the treatment and support of patients with rare diseases.
According to government sources, a brainstorming session involving experts has been scheduled next month, where a draft policy is expected to be prepared. The policy will be finalised and declared by February 29, to mark Rare Disease Day.
The World Health Organisation defines a rare disease as a “debilitating life-long disease or disorder with a prevalence of 1 or less, per 1,000 population.” Different countries have their own definitions considering their specific requirements, nature of the population, and health-care resources. A registry of rare diseases patients across the country is yet to be prepared.
