The Employees State Insurance Corporation (ESIC) on May 25, 2023, issued a notification regarding the Parental screening and preventative measures for Rare diseases
This has a reference to the National Policy on Rare Diseases 2021 (NPRD 21) and the ESIC’s Operational Manual for Rare Diseases.
The following has been stated namely: -
• It states that due to the High-Cost rare disease cases where more than one child of the family has been diagnosed with a rare disease, emphasis shall be given to the points elaborated under NPRD 21 and ESIC Operational Manual for Rare Diseases, Prevention plays a pivotal role in minimizing the occurrence and severity of rare diseases.
• It states that Adopting preventive strategies not only reduces the expenditure cost on such cases but also enhances the overall well-being of individuals.
• It Further states that in line with NPRD 21, Nidan Kendra has been set up by the Department of Biotechnology under the Unique Methods of Management and Treatment of Inherited Disorders project for genetic testing and counseling services.
• The Nidan Kendras will be performing screening, genetic testing, and counseling for rare diseases, The Competent Authority has also desired the details of both existing and future cases be shared with the listed Nidan Kendras (under NPRD21) for their record and research purpose.
[Notification No. E.No: U-16012/392/2022-SST]
