MERD India Foundation | Newsletter Summary
throughout June, the Merdindia Foundation provided vital informational support to around 25 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.
🏛️ Announcing Our Permanent Rare Disease Gallery in Jaipur
On behalf of the Merdindia Foundation Parent Support Group, we are proud to announce the establishment of our permanent Rare Disease Gallery at our foundation office in Jaipur.
This permanent exhibition is dedicated to spreading continuous, life-saving awareness about Newborn Screening (NBS), Inborn Errors of Metabolism (IEM), and Rare Genetic Disorders. Continuous awareness is the ultimate key to early diagnosis and saving precious lives.
Our Appeal to Medical Institutions:
As tomorrow’s healthcare leaders, medical students and professionals play a pivotal role in the early detection and management of these conditions. We kindly appeal to college and hospital management to encourage medical students, interns, residents, and faculty members to visit this gallery. Experiencing this exhibition will provide valuable insights into both the clinical and familial realities of rare genetic disorders.
Location: MERD India Foundation Office, Film Colony, Jaipur
Landmark: Handloom Emporium, Nehru Bazar, Jaipur
June 29: International Newborn Screening Day
In observance of International Newborn Screening Day (dedicated to Dr. Robert Guthrie), our foundation visited several hospitals in Jaipur to express our deep gratitude to the dedicated doctors implementing universal newborn screening and saving lives.
We had the privilege of meeting:
Dr. Mangal (Babylon Hospital)
Dr. Vaibhav (Mahatma Gandhi Hospital)
Dr. Ashok Gupta (Gitanjali Hospital)
Dr. Anupam (SDMH)
Dr. Deepchand (Rajasthan Hospital)
Dr. Rajkumar (EHCC)
Dr. Deepak Shivpuri
Dr. Akash Sharma
Dr. Natver (Surya Hospital)
Dr. Sharad Sharma (Fortis Hospital)
Dr. J.K. Mittal (NeoClinic)
Dr. Manish Mittal (Cocoon Hospital)
June 27–28: ISPGHANCON Conference, Jaipur
We participated in the ISPGHANCON Conference at the Rajasthan International Centre, Jaipur. The event featured highly informative sessions led by Dr. S.K. Yacha, Dr. Anupam Sibal, and other leading medical professionals.
June 21: Rare Disease Policy Meeting, Bengaluru
We joined a collaborative meeting in Bengaluru with nodal officers from the Centre of Excellence for Rare Diseases and stakeholders from parent support groups. The discussion focused on understanding current hurdles and finding actionable solutions regarding the national rare diseases policy.
June 20: Dual Events in Bengaluru
Our team attended two exceptional events in Bengaluru:
'Aarohan' (आरोहण): A special children's event organized by the Tamahar Trust at Sindhi High School, Hebbal.
The Rare Award Function: Organized by the Organization for Rare Diseases India (ORDI) at Fairfield by Marriott.
June 13: Parent-Doctor Interactive Session, Mumbai
Continuing our commitment to the cause of "Healthy Children, Healthy Nation" through newborn screening, we held interactive sessions at Wadia Hospital, Mumbai. Parents shared their personal challenges and experiences, fostering meaningful dialogue with attending doctors.
June 10: Webinar on Genetics & Advocacy Ethics
We attended an insightful webinar titled "Role of NGOs in awareness about pregnancy management and genetic testing: Ethics in the era of precision medicine," featuring renowned geneticists Dr. Snehal Mallakmir and Dr. N. Indhumathi. As a patient-led support group, this session offered invaluable guidance on bridging the gap between lived family experiences and the medical community to build trusted relationships with our doctors.
June 6: "Vijay Gatha" Event, swaimadopur
We spoke on the vital importance of universal newborn screening and raising awareness for metabolic and rare diseases at the "Vijay Gatha" event. Organized proudly by JJS and CODI, the event welcomed Civil Lines MLA Gopal Ji Sharma as the Chief Guest.
June 3: Genetic Disorders Webinar
We attended a webinar focused on the "Diagnostic approach to genetic disorders." The session was organized by ORDI, featuring speaker Dr. Manisha Goyal (Dept. of Medical Genetics, JK Lone Hospital, SMS Medical College, Jaipur) and moderator Ms. Kriti Menon (Senior Genetic Counselor, Apollo Genomics Institutes, New Delhi).
🌐 Global News Update
The World Health Organization (WHO) has urged a global scale-up of newborn screening to improve early detection and care for birth defects. Read the full official briefing here: WHO Urges Scale-Up of Newborn Screening.