MERD India Foundation | Newsletter Summary
As September—Newborn Screening Awareness Month—draws to a close, we look back at a month filled with incredible outreach, powerful collaborations, and monumental strides toward making universal newborn screening (NBS) a reality for every child in India.
Early detection is our greatest weapon against Inborn Errors of Metabolism (IEM) and rare genetic conditions. Thanks to your continued support, our mission reached hospitals, medical colleges, and thousands of households this month. Let’s take a look at what we accomplished together!
🚀 September 2026: Month in Review
Provide informative support around 30 people regarding inborn errors of metabolism, rare diseases, and newborn screening.
September 1 | Ahmedabad, Gujarat: Met with medical officers at Civil Hospital and IKDRC, followed by a deeply impactful strategy session with 20 parents and advocates to address hurdles and strategize on establishing a Rare Disease Center of Excellence in Gujarat.
September 5 | AIIMS Bathinda, Punjab: Supported the Newborn Screening Awareness Programme & CME 2026, presenting on the "Role of Parents Support Group" to over 150 medical professionals and students. The session was highlighted by a moving family testimony on the life-changing power of early detection.
September 12 | Jaipur, Rajasthan: Participated in the Gene Cure Summit 2026 at the Rajasthan International Centre, passionately advocating for mandatory newborn screening guidance, national implementation, and upgraded treatments at Centres of Excellence.
September 16 | Alwar, Rajasthan: Promoted Newborn Screening Awareness across key healthcare centers—including Sania, Surya, Sethi Children's, Harish Children's, and Geetanand Hospitals—noting with great encouragement that NBS is steadily becoming core clinical practice.
September 19 | Jaipur, Rajasthan: Partnered with Lions Club Jaipur Adarsh Nagar under the banner "Healthy Children, Healthy Nation." In a massive community push, 42,000 informative pamphlets detailing childhood cancer symptoms and universal newborn screening were distributed to Jaipur households via major daily newspapers.
September 25 | Sikar, Rajasthan: Engaged directly with gynecologists and child care specialists across Shri Kalyan Medical College, Bachpan Hospital, Saroj Hospital, and Balaji Hospital.
September 29 | Churu, Rajasthan: Visited Dedraj Bhartia Janana Government Hospital, Matra Chhaya Hospital, and Aryan Hospital to foster greater awareness among healthcare professionals and parents about the crucial role of comprehensive newborn screening.
📰 Joyful National News: Karnataka Steps Up!
In fantastic news for the rare disease community, Karnataka is set to launch universal newborn screening in phases starting next month! According to official department updates, the initiative will begin at key facilities like Vani Vilas and expand to the Indira Gandhi Institute of Child Health and Jayanagar in subsequent phases.
This major policy shift moves us one step closer to a nationwide mandate, ensuring that children born with treatable Inborn Errors of Metabolism receive timely interventions before symptoms manifest.