MERD India Foundation | Newsletter Summary
Issue: March 2026 Recap
Key Highlights & Advocacy Milestones
March 31: Strengthening the Rare Disease Research Ecosystem
Participated in a critical webinar exploring "Why Patient Participation Matters: Natural History Studies and Clinical Trials."
Scientific Baseline: Experts like Dr. Smita Brahma and Prof. Alok Bhattacharya emphasized that Natural History Studies are the foundation for proving if new drugs actually work.
Infrastructure & Policy: Dr. Shoibal Mukherjee and Prof. Sudha Bhattacharya discussed the regulatory hurdles in India and the "burden of participation" on families.
Our Voice: We advocated for clearer guidance for parents navigating the choice between standard care and experimental trials.
March 18: Closing the Gap in Newborn Screening (NBS)
Attended the ORDI Rare Info Series featuring Dr. Saurabh Dani and Dr. Deepa Bhat.
The Missing Link: We raised pressing questions on why NBS is not yet a standard protocol in India despite high prenatal scan volumes. Universal screening is essential to prevent late diagnoses.
March 15: A Decade of Care at IIC Delhi
Represented MERD India Foundation at the ASL Care and Support Group milestone event at the India International Centre. We celebrated 10 years of dedicated service, providing a vital voice and care network for the rare disease community.
March 14: Rare Disease Redefined (MAIDS, New Delhi)
Joined the seminar organized by the Department of Medical Genetics (MAMC & Lok Nayak Hospital).
Patient-Centric Care: Parents shared the raw challenges of navigating the healthcare system.
Spirit of Resilience: The event was highlighted by moving performances by children battling rare diseases, proving that their spirit remains unbreakable.
Spotlight: Hope from the Capital
"A few drops of blood that can change a life."
We celebrate the positive news regarding Delhi’s Newborn Screening push ("Anmol"). This initiative is a major victory for early intervention, ensuring that rare conditions are caught at birth when treatment is most effective.
From the Founder's Desk
https://www.medboundtimes.com/medicine/rare-disease-day-2026-a-fathers-promise-that-became-indias-rare-disease-movement#google_vignette
"We continue to be the voice for those who cannot speak for themselves. Whether through clinical trial advocacy or pushing for universal screening, our mission remains to bridge the gap between medical science and the lived experience of our families." — Vikas Bhatia