Team Herald
PANJIM: The Goa State Commission for Protection of Child Rights (GSCPCR) has called for a holistic, comprehensive and multi-disciplinary response to rare diseases among children. The Commission conducted a meeting with stakeholders and advocacy groups to review the response to rare disease among children in Goa.
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Peter F Borges, Chairperson said that children affected by rare diseases are currently marginalised and invisible and have a right to life, health, good quality of life and holistic development and good quality of treatment and care. They are living with chronic and complex conditions, with increased suffering, requiring multidisciplinary care,” he said.
The Commission has recommended for changes and upgradation in the system in addition to calling for effective implementation of National Policy for Rare Diseases, 2021 in Goa. Urgently identify and create a registry of children with rare diseases as notified in the National Policy for Rare Diseases, 2021, to understand the burden in the state and include other rare diseases which are not listed in the policy, in the registry.
All children living with rare diseases in Goa should be identified and referred to Centre of Excellence for provision of financial support of Rs 50 lakhs and other services as per National Policy for Rare Diseases, 2021.
Children with rare diseases face great difficulty to attend school due to inaccessibility of facilities and non-adapted teaching methods and due to prejudice, stigma, and discrimination. Include Glanzmann Thrombosthenia in the National Rare Disease Policy 2021. The disease, a rare bleeding disorder, in which a slight injury can lead to bleeding and blood platelets must be given every bleed, is diagnosed in a child in Goa.
