MERD India urges various agencies involved in the improvement of Neonatal care to implement the following at the earliest
1. Mandate Newborn Screening at a National level
Eg- Visible Birth Defect
Functional Birth Defects
Metabolic Defect
2. Create adequate infrastructure for mass screening programs.
3.. Create a National Newborn Screening Registry.
4. Create adequate infrastructure to give best available treatment for IEMS and other genetic and Rare diseases.
5. We commend the step of clinical trials and request that the clinical trials be made as safe as possible for the patients suffering from metabolic and other rare diseases and for them to be conducted only by experts.
6. Rare Disease centre in every state and union territory in main government hospital should be established and in the future clinical trials may be conducted in these hospitals.
Please sincerely look into our Appeal and help to make our country a better and safer place for Newborns.
