MERD India Foundation | Newsletter Summary
throughout July, the Merdindia Foundation provided vital informational support to around 20 individuals navigating Inborn Errors of Metabolism (IEM) and rare diseases.
We are also thrilled to share a major milestone: the launch of our permanent gallery, alongside a summary of our key initiatives, conferences, and advocacy milestones this month.
Activity & Event Highlights
July 2026
- 31st: Attended a webinar on Rare Diseases Strategy organized by Apollo Genomics.
- Speakers: Prof. (Dr.) Dhavendra Kumar, Dr. Madhulika Kabra, and Mr. Arjun Gupta and Prasanna ji
- Moderators: Dr. Priya Ranganath (Bannerghatta Road, Bengaluru) and Dr. Dipanjana Datta (Kolkata)
- During the interactive session, I shared two key suggestions:
- CSR Integration & Insurance: Encouraging companies to adopt rare disease initiatives under their CSR programs, including coverage/insurance for 63 rare diseases during pregnancy.
- Patient Access: Issuing a dedicated "Rare Disease Card" so patients can seamlessly access treatment at any Center of Excellence.
- 25th: Co-hosted a Newborn Screening Awareness Seminar with Neo Clinic, Jaipur, with 42 attendees, including healthcare professionals, medical students, Lions Club members, and parents. Heartfelt thanks to Chairpersons Dr. Sanjiv Hooja and Dr. Nupur Hooja, and speakers Dr. J.K. Mittal and Dr. Priyanshu Mathur, for their valuable insights.
- 22nd: Attended the webinar "Newborn Screening for Core Disorders," featuring Dr. Seema Kapoor and moderated by Dr. Deepa Bhat.
- 15th: Attended an ORDI webinar on newborn screening for hemoglobinopathies, featuring keynote speaker Dr. Bhavna Dhingra (AIIMS Bhopal) and moderator Dr. Kshitija Patil (Apollo Hospitals, Navi Mumbai).
- 8th: Attended an ORDI webinar on Alkaptonuria (Black Bone Disease) featuring Dr. Sumita Danda (CMC Vellore), moderated by Dr. Dipanjana Datta (Kolkata).
- 4th: Attended the 11th Board of Genetic Counseling India (BGCI) Conference at the Central University of Punjab, Bathinda. Raised key questions on universal screening in childcare centers and visited AIIMS Bathinda to meet leading experts Dr. Kaushik Mandal, Dr. Rajni, Dr. Deepa Bhat, and Dr. Parminder Kaur.
- 1st–3rd: In honor of Doctors' Day, visited key hospitals to express gratitude for their life-saving work in medical genetics:
- Jaipur: Mahatma Gandhi Hospital, Janana Hospital, and Mahila Chikitsalaya (met with Dr. Sitaraman, Dr. Sunil Gothwal, and Dr. Virendra Garg).
- New Delhi: Sir Ganga Ram Hospital (met with Dr. Ratna Puri and Dr. Sunita Bijrania).
Happy News
https://www.thehindu.com/news/national/karnataka/universal-newborn-screening-scheme-approved-for-kalyana-karnataka-districts/article70952135.ece
