Recent Activities of MERD India in July 2025
MERD India provided informational support to more than 20 people regarding Inborn Errors of Metabolism (IEM), Newborn Screening (NBS), and rare diseases.
Webinars and Meetings
July 26: We participated in a webinar focused on the long-term management of inborn errors of metabolism, urea cycle diseases, and organic acidemias. The speaker was Dr. Anil Jalan, and the moderator was Dr. Deepa Bhat.
July 12: We participated in a webinar focused on the "Genome Status in the Indian Perspective," organized by the Organization for Rare Disease India. The keynote speaker was Dr. Ashwin Dalal from the Centre for DNA Fingerprinting and Diagnostics (CDFD), and the moderator was Dr. Deepa Bhat from JSS. It was an excellent webinar on the topic.
July 18: We( Vikas Bhatia and Ashutosh Basotia) had a productive meeting with Dr. Amit Yadav, Mission Director for the National Health Mission, Rajasthan. We would like to thank him for his time and his enthusiasm to support parents. During the meeting, we presented and discussed a proposal for establishing statewide Newborn Screening (NBS) units in government healthcare institutions across Rajasthan. The goal is to detect and manage critical congenital and rare genetic conditions at birth.
Key Discussion Points:
The MERD India Foundation team shared a comprehensive proposal advocating for NBS units in each city's government hospital. The key conditions proposed for screening included:
Congenital hypothyroidism
G6PD Deficiency
Newborn Hearing Defects
Critical Congenital Heart Disease (CCHD)
Positive News
A Memorandum of Understanding (MoU) was signed between Apollo Children’s Hospital (ACH), Chennai, and the Rashtriya Bal Swasthya Karyakram (RBSK) Program under the National Health Mission (NHM), Nagaland. The signing took place on July 24, 2025, at the office of the Mission Director, NHM. The MoU is for the screening and treatment of congenital heart diseases for children aged 0 to 18.
As per the MoU, NHM will organize screening camps in collaboration with Apollo Children’s Hospital, Chennai, in Nagaland. Children requiring further treatment will be referred to Apollo Children’s Hospital, Chennai. The expenses will be covered by NHM as per the RBSK model costing, and any additional expenditure will be taken care of by the Apollo Hospital Charitable Trust.
You can find more inf-ormation here: https://ipr.nagaland.gov.in/mou-apollo-childrens-hospital-rbsk-nagaland-july-2025