MERDIndia Newsletter - June 2025 Highlights
MERDIndia's activities from June 2025.
Your continued support empowers us to make a significant impact in the lives of individuals and families affected by rare diseases.
Informative Support
In June, MERDIndia provided informative support to over 40 people regarding Inborn Errors of Metabolism (IEM), Newborn Screening (NBS), and various rare diseases. Our aim is to equip individuals and families with crucial knowledge to navigate these complex conditions.
Key Participations & Events
We had a busy and impactful month, participating in several important events:
June 28, 2025: Successful Seminar on International Newborn Screening Day
The MERDIndia Foundation and IEM Support Trust proudly co-hosted a highly successful seminar at Yashoda Super Speciality Hospital, Kaushambi, in celebration of International Newborn Screening Day.
The event saw approximately 75 attendees, including medical professionals, students, parents, and support groups. We were honored to have an excellent panel of key speakers: Dr. J.P. Kapoor, Dr. Seema Kapoor, Dr. Bhavana, Dr. Deepika, and Dr. Aasush, who shared their invaluable insights.
A special thank you to Sarika Modi ji, Atul ji, and Manjeet ji for their wonderful support in making this event possible.
June 14, 2025: Webinar on Inborn Errors of Metabolism
We participated in a webinar titled "Small Genes, Big Impact: Understanding Inherited Metabolic Disorders in Children." The key speaker was Dr. Gauri Krishna, and the session was moderated by Dr. Upasana Mukherjee. This insightful webinar was organized by ORDI (Organization for Rare Diseases India).
June 7, 2025: Webinar on Sickle Cell Disease
Earlier in the month, we also participated in a webinar focused on Sickle Cell Disease. The key speaker was Dr. Deepa Bhat from Mysore, and the webinar was organized by ORDI.
Happy News!
We're delighted to share positive news that reinforces the importance of our work:
Newborn screening, early treatment can cut sickle cell deaths: ICMR study
A recent ICMR study highlights that newborn screening and early treatment can significantly reduce sickle cell deaths. This underscores the critical need for widespread newborn screening initiatives. You can read more about this study here: https://www.business-standard.com/health/newborn-screening-early-treatment-can-cut-sickle-cell-deaths-icmr-study-125062200202_1.html