Appeal

MERD India urges various agencies involved in the improvement of Neonatal care to implement the following at the earliest

Key Recommendations for Neonatal Care
Mandate newborn screening nationally: This should include screening for visible, functional, and metabolic birth defects.

Establish infrastructure for mass screening programs: Adequate facilities are crucial for widespread and effective screening.

Create a National Newborn Screening Registry: A centralized registry will help track data and outcomes across the country.

Provide adequate treatment infrastructure: Establish facilities that offer the best available treatment for Inborn Errors of Metabolism (IEMs) and other genetic and rare diseases.

Ensure patient safety in clinical trials: We commend the initiation of clinical trials and request that they be conducted with the utmost safety for patients suffering from metabolic and other rare diseases. These trials should only be overseen by qualified experts.

Establish Rare Disease Centers: A dedicated Rare Disease Center should be established in the main government hospital of every state and union territory. These centers could also serve as venues for future clinical trials.

We sincerely appeal for your support to help make our country a better and safer place for newborns.