The Goa State Commission for Protection of Child Rights conducted a meeting with stakeholders and advocacy groups to review the response to rare diseases among children in Goa on May 10, 2023, in the chambers of the chairperson of Goa SCPCR, Peter F Borges.
The meeting was attended by members of the Commission, the Directorate of Health Services, the Paediatric Department, Goa Medical College, the Directorate of Education, Novi Survat and affected parents.
In the opening remarks, Peter F Borges said, “Children affected by rare diseases are currently marginalised and invisible. They have a right to life, health, good quality of life and holistic development, and quality treatment and care. They are living with chronic and complex conditions, with increased suffering, requiring multidisciplinary care.”
Further, he said that caring for such children entails life-long challenges and personal sacrifices of many parents, much of which disproportionately fall upon women, particularly mothers.
Many are forced to abandon their employment with a very direct implication on their economic conditions, with scant support and social protection from the government.
The following key recommendations were proposed by the Commission, besides calling for the effective implementation of the 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 on 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 the Centre of Excellence for the provision of financial support of Rs 50 lakh and other services as per the National Policy for Rare Diseases, 2021.
Include children with a rare disease as a category for social protection benefits through the Dayanand Social Security Scheme by Social Welfare to ease financial hardship in families of children with rare diseases, ie to purchase specialised equipment and compensate for the loss of income to caregivers.
Provide home-based education with the appointment of home-based educators for children with rare diseases under Samagra Shiksha. Children with rare diseases face great difficulty in attending school due to the inaccessibility of facilities, non-adapted teaching methods and due to prejudice, stigma, and discrimination.
Include Glanzmann Thrombosthenia in the National Rare Disease Policy, 2021. It is a rare bleeding disorder in which a slight injury can lead to bleeding, and blood platelets must be given every time bleeding takes place. It has been diagnosed in a child in Goa.