MERD India Foundation actively organizes and participates in diverse initiatives to raise crucial awareness among the public, healthcare professionals, and government agencies about Inborn Errors of Metabolism (IEM), rare genetic disorders, newborn screening, and "Healthy Children, Healthy Nation."
Impact & Reach (As of aug , 2026)
450+ campaigns organized or participated in—including seminars, webinars, hospital visits, doctors' meets, and meetings.
Active footprint spanning 21 States & Union Territories and 55 Indian Cities.
August -2026
On the occasion of our 80th Independence Day, we continued our awareness and advocacy campaign in Hyderabad by visiting Ankura Hospital, Prathima Hospital, and Shalini Hospital.
During the campaign, we had the opportunity to meet Dr. Srinivas Murki, Dr. Giridhar, and Dr. Mounica V. It was a deeply meaningful experience, and all the esteemed doctors greatly appreciated our ongoing efforts toward creating awareness and strengthening advocacy.
july -2026
Participated in an excellent webinar on Newborn Screening featuring Dr. Atanu Kumar Dutta (AIIMS Kalyani) and moderator Dr. Emlee Banerjee Bhattacharya. The session underscored why screening is the first line of defense against rare diseases. On behalf of the MERD India Foundation, participated in the Q&A session to further discuss the vital role of early diagnosis.
Participated in a comprehensive rare diseases seminar organized by the Center of Excellence, Assam Medical College, Dibrugarh. Excellent management by Dr. Anupam Dutta and team.
Participated in a webinar focused on "Bridging the Gaps in Rare Diseases: From Discovery to Access in India," an initiative by VOH supported by Akums.
MERD India Foundation, along with the Lions Club Jaipur Adarsh Nagar, distributed 50 new clothes to newborns and infants at Kawatia Hospital, Jaipur, as part of the "Healthy Children, Healthy Nation" signature program. Lions Club Jaipur Adarsh Nagar members present included Lion Mahendra Bhirathi, Surendra Gupta, Anita Gupta, and Sangeeta Gupta. Special thanks for the excellent support from MS Dr. R.S. Charan, HoD Dr. Jeetan Ram Meena, and their teams.
MERD India Foundation, along with the Lions Club Jaipur Adarsh Nagar, distributed 100 new woolen clothes to newborns at Janana Hospital, Chandpole Bazar, Jaipur. We received excellent support from Dr. Virendra Garg and his team in the Gynecology Department. We believe we are on the right path toward building a healthy nation with healthy children.
We observed Inborn Errors of Metabolism Day at AIIMS Patna. It was a wonderful seminar attended by approximately 90 people, including medical professionals, postgraduates, and medical students. The key speakers were Dr. Dipanjana Datta from Kolkata, Dr. Pooja Motwani from Lucknow, and Dr. Swarnim and Dr. Puneet Choudhary from Patna.
The Newborn Screening Awareness Program held at AIIMS Kalyani on Saturday, 15th November 2025, concluded successfully with the participation of 75 medical professionals and students. The program's theme was "Building Healthier Futures, One Heel Prick at a Time." It focused on strengthening Newborn Screening (NBS) implementation and covered its purpose, scope, screened conditions, and practical departmental roles. Speakers and contributors included Executive Director & HoD (Biochemistry) Dr. Kalyan, Dr. Ritesh Singh (CMFM), Dr. Mita Mandal (OBG), Dr. Richa Gupta (Neonatology), Dr. Iba KH Hadem (Biochemistry), Dr. Soham (Neonatology), and Dr. Niladri (Pediatrics). Excellent support and management were provided by Dr. Atanu (Biochemistry).
Participated in the webinar, "Addressing Mitochondrial Dysfunction and Depletion: Critical for Addressing All Pathologies," hosted by Sphaera Pharma in collaboration with Blue Oak Nutraceuticals. The key speaker was Dr. Sandeep Duggar.
Participated in a seminar focused on digital detox for children, where views were also presented. The event was organized and supported by Shakhti Sutra, Jai Janani Sansthan, CODI, and EHCC Hospital, and was held in the EHCC seminar room.
Participated and shared views in an ICMR Webinar on Disease-Specific Registry Roadmap today to set the framework for structured collection of patient information. This meeting was supported by ICMR to guide the way forward. Key speakers included Prof. Y.K. Gupta (AIIMS Jammu), Dr. Amlin Shukla (ICMR Registry), Mr. Rahul Vipparthi (TSC Alliance), Dr. Sudha Bhattacharya (Gene Myopathy), Ms. Sarika Modi (IEM Support Group), Mr. Sriharsha (PWS Group), Ms. Rama Murali (Bharat MD), and Ms. Satvinder Kaur (ALS). Webinar moderation was conducted by Dr. Alok Bhattacharya (Gene Myopathy) and Mr. Samir Sethi (Rett Syndrome), with closing remarks by Dr. Rakesh Mishra (TIGS).
We continued the "Healthy Children, Healthy Nation" campaign alongside Lions Club Jaipur Adarsh Nagar District 3233E1 Service Week. Distributed informational short posters for our signature program through various newspapers, reaching approximately 30,000 copies.
On World Mental Health Day, we partnered with the Lions Club Jaipur Adarsh Nagar to organize a seminar at Manipal University for 200 college students. The key speakers were Dr. Tushar Jagawat and Dr. Savita Jagawat.
Held a magic show and donated 51 lunch boxes to children in need at Kavita Cancer Care Center, Jaipur.
Continuing to observe Newborn Screening Awareness Month, the MERD India Foundation had an excellent discussion with Dr. Sonali during a visit to Bombay Hospital, Jagatpura regarding newborn screening. Following that, participated in a productive roundtable discussion at MG Hospital, Sitapura. The presentation by Dr. Satyan Hemrajani, Dr. Madhu, and Dr. Saurabh, along with the entire MG Hospital Department of Child Care medical team, was outstanding and generated a great discussion.
Participated in a seminar focused on "Innovations in Mother and Child Healthcare: From Research to Practice" at the Rajasthan International Centre (RIC) in Jaipur, organized by the Rajasthan State Branch of NARCHI.
As part of Newborn Screening Awareness Month, the MERD India Foundation was pleased to participate in a webinar on patient safety. The event, hosted by DakshamA Health, was titled "Strengthening Public Health Systems: Policies, Partnerships, and Strategies for Safe Newborn and Child Care."
During Newborn Screening Awareness Month, we continued our "Healthy Children, Healthy Nation" initiative by visiting Tonk, Rajasthan, to raise awareness about newborn screening. We distributed informational posters to pediatricians and gynecologists at several hospitals, including Saadat Government Hospital, Agarwal Hospital, Bansal Hospital, and Tripathi Children's Hospital. We are grateful for the great support received from Dr. Vijender Tripathi, Dr. Sushma Agarwal, Dr. Rajiv Bansal, Dr. Satyanarayana, their teams, and other respected doctors.
A newborn screening awareness campaign was held at several hospitals in Bhilwara, Rajasthan, India, as part of Newborn Screening Awareness Month. The campaign involved distributing posters to Sparsh Hospital, Ram Snehi Hospital, Keshav Prawal Hospital, Ajmera Hospital, and Shri Sidhi Vinayak Hospital. The effort received support from doctors including Dr. Atul Heda, Dr. Pooja Jain, Dr. Akanksha Shrivastava, Dr. Ashish Ajmera, Dr. Rekha Sharma, and Dr. Mehul Sukher.
Organized a two-day Newborn Screening Awareness Gallery. On 30th and 31st August 2025, we were thrilled to welcome over 450 visitors. It was also wonderful to see about 20 parents and their families participate in the poster gallery. We are hopeful that we are on the right path toward fulfilling our foundation’s mission of awareness, advocacy, and support for parents. We would greatly appreciate any suggestions on how we can improve our mission in the future.
Participated in a seminar in Jaipur titled "Genetic & Metabolic Miracles: Unlocking Treatable Disorders," focused on advancing patient care. The event was organized by ISIEM Jaipur, IAP Jaipur Branch, and NNF Rajasthan.
Attended a webinar on Rare Diseases, a summit organized by FICCI in collaboration with NITI Aayog. Representatives from parent advocacy groups—including ORDI, Cure SMA, and the Samyara Foundation—were also present.
Representing the MERD India Foundation and Lions Club District 3233E1, attended an Independence Day event in Kolkata. The program, organized by District 322B2, was a truly unique experience, highlighted by the "Freedom to Fun" activity for special children. The event was graced by the presence of Dr. Ratna Puri as the chief guest, and the ceremony was moderated by Dr. Dipanjana Datta.
Participated in a webinar focused on the long-term management of inborn errors of metabolism, specifically urea cycle disorders and organic acidemia. The key speaker was Dr. Anil Jalan, and the session was moderated by Dr. Deepa Bhat.
Participated in a webinar focused on "Genome Status in Indian Perspective." The key speaker was Dr. Ashwin Dalal from CDFD, and the session was moderated by Dr. Deepa Bhat from JSS. Organized by the Organization for Rare Diseases India (ORDI), it was one of the best webinars on the topic.
On 28th June 2025, the MERD India Foundation and IEM Support Trust 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, and parent support groups—engage with valuable insights from an excellent panel of key speakers: Dr. J.P. Kapoor, Dr. Seema Kapoor, Dr. Bhavana, Dr. Deepika, and Dr. Aasush. A special thank you is extended to Sarika Modi Ji, Atul Ji, and Manjeet Ji for their wonderful support in making this event possible.
14th June 2025
Participated in a webinar on Inborn Errors of Metabolism 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. The webinar was organized by ORDI.
Participated in a webinar focused on Sickle Cell Disease. The key speaker was Dr. Deepa Bhat from Mysore. The webinar was organized by ORDI (Organization for Rare Diseases India).
Organized and supported a newborn screening seminar at Dr. Rajendra Prasad Government Medical College (DRPGMC), Tanda, Kangra, Himachal Pradesh. It was a very successful seminar attended by 70 people. Special thanks to our parent representative Vivek Choudhary Ji for joining the seminar. Great support was provided by Principal Dr. Milap Sharma and Dr. Atul Gupta. Key speakers included Dr. P.D. Gupta, Dr. Seema Sharma, Dr. Tanu Sharma, and Dr. Pardeep Attari. Hopefully, we are on the right path toward creating awareness among doctors and parents.
On World Thalassemia Day, participated in a webinar focused on "Thalassemia: Innovations & Future Directions." The key speakers were Dr. Raj Kumar and Dr. Manojit Chakraborty. The webinar was organized by MedGenome.
Visited Yashoda Medicity Hospital, Indirapuram, Ghaziabad along with Sarika Modi Ji from the IEM Support Group. Met Dr. Sunil Dagger (CEO) to present a Newborn Screening poster. We also toured the hospital, particularly the mother and child care zone, which was a wonderful experience.
Visited Manglam Med City Hospital, Jaipur along with Lions Club Jaipur Adarsh Nagar PST to present a poster to Dr. Deependra Bhatnagar for the "Healthy Children, Healthy Nation" initiative. Also participated in a health awareness program at Manipal Hospital, Jaipur organized by Lions Club Unique.
On the occasion of DNA Day, participated in the "Rare Star" function in Bengaluru organized by ORDI. The chief guest was Dr. Madhulika Kabra, along with representatives from several Parent Advocacy Groups (PAGs) across India.
Visited Udaipur and met with renowned childcare specialist Dr. Devendra Sareen and his family to discuss Newborn Screening awareness.
Participated in a webinar titled "Tuberous Sclerosis Complex: From Cysts to Seizures." The speaker was Dr. Yincet Tse, and the session was moderated by Dr. Dipanjana Datta and Dr. Rajiv Sinha. The webinar was organized by the Organization for Rare Diseases India (ORDI).
Participated in a webinar titled "How to Investigate Sudden Death in Children." The speaker was Dr. S. Mani Rama Krishna, and the session was moderated by Ms. Deepti. Organized by ORDI.
Participated and shared views at the Patient Summit 2025 on the rare disease scenario in India, held at The Park, New Delhi. The event was organized by PAIR and co-delivered by Dakshayani and Amaravati Health and Education (DakshamA Health).
Participated in and supported Rare Disease Day celebrations in Jaipur with the Rare Diseases Foundation and JK Lon Hospital, featuring a "Walk for Rare Diseases" at the Rajasthan International Centre. Also organized a Rare Disease Day celebration at the Approach Autism Society with a magic and music program—a wonderful way to observe the day. Great support was provided by MERD India Foundation members Ujjwal, Piyush, Shipra, Veer, Mohit, and Chhavi Ji, as well as Anurag and Garima Ji from the Approach Autism Society.
Participated in the "Race for Rare Diseases Awareness" in Chandigarh, organized by ORDI from PGIMER to Sukhna Lake. Around 90 people attended the event. Excellent support was provided by Deepti Choudhary, Dr. Inusha Panigrahi, and her team. Chief guests included Dean Prof. R.K. Ratho of PGIMER and Dr. Bhavneet Bharti.
Continuing efforts for "Healthy Children, Healthy Nation," attended a CME on Newborn Screening organized by Trivitron Healthcare at Hotel Hilton, Jaipur. Key speakers included Dr. Priyanshu Mathur, Dr. Shrihari M. Nair, and Dr. Manish Bansal. Panelists included Dr. Jaikishan Mittal, Dr. Rashmi Gupta, Dr. Sunita Dhakad, and Dr. Manisha Goyal. Around 50 doctors and several parent support groups attended.
Continuing efforts for "Healthy Children, Healthy Nation," participated in a CME on "Caring for Both Ends of the Cord," organized by RHL Babylon, NARCHI, IAP Jaipur, and NNF Rajasthan at Rajasthan Hospital, Jaipur.
Conducted an activity at Mahila Chikitsalaya, Sanganeri Gate, Jaipur with Lions Club Jaipur Adarsh Nagar and Utthan Trust, distributing 60 new woolen clothes to newborns. Special thanks to Dr. Sunil Gothwal, Dr. Vishnu Agarwal, the Medical Superintendent, and the hospital team for their wonderful support.
Participated in the GAPIO Seminar organized by the Global Association of Physicians of Indian Origin at Hotel Radisson Blu Plaza, Mysuru, and received the Commendation Award. Met with Dr. Deepa Bhat from JSS Medical College to discuss rare disease perspectives in India.
Participated as a panelist in a Newborn Screening discussion on "Samvad," organized by ISPAT and AGOS Jaipur at Hotel Park Prime, Jaipur. The discussion was moderated by Dr. Saurabh Dani, and co-panelists included Dr. Ram Babu Agarwal, Dr. Vishnu Agarwal, Dr. Priyanshu Mathur, and Dr. Indira Lamba (OBG).
Conducted an activity at PBM Hospital, Bikaner, distributing 100 new woolen clothes in the nursery. Held an excellent discussion with the Department of Pediatrics and the Department of Gynecology for the "Healthy Children, Healthy Nation" initiative. Thank you to Dr. Shyam Agarwal, Dr. Kuldeep Bittoo, Dr. Beniwal, Dr. Sarika Swami, and all PBM doctors and medical professionals for their outstanding support.
2025-Hospitals /Doctors meet -14
2025-Activities Conducted -45
2023-Hospitals /Doctors meet 12
2023-Activities Conducted -32
18th: Jaipur — Organized a Health Awareness Seminar at HCG Hospital alongside Lions Club Jaipur Adarsh Nagar, Jain Social Group Rajdhani, and the Women Cancer Society. The seminar focused on cancer prevention, symptoms, and treatment, and included a signature campaign on newborn screening awareness. Key speakers were Dr. Jitendra, Dr. Sumita Jain, and Dr. S.K. Jain, with around 50 attendees.
25th: Bengaluru — Participated as a panelist in an event organized by ORDI and TIGS, sharing perspectives with pediatricians, policymakers, and researchers regarding the importance of newborn screening and rare disease awareness in India.
22nd: Jaipur — Distributed 36 new woolen garments to newborn babies and discussed newborn screening awareness and Inborn Errors of Metabolism (IEM) with pediatricians at Gangori Hospital, Jaipur. Received excellent support from Dr. Ramesh Choudhary and team.
21st: Jaipur — Observed Inborn Errors of Metabolism (IEM) Day at Mahila Chikitsalaya, providing 60 new woolen garments to newborns and discussing IEM disorders with childcare doctors, supported by hospital management, Dr. Sunil Gothwal, and Dr. Rinku Saini.
20th: Mysuru — Organized an Inborn Errors of Metabolism Day seminar supported by JSS, IAP, ORDI, and the IEM Support Charitable Trust. Attended by over 80 people (including 9 parents and 4 children), with key presentations by Dr. Seema Kapoor, Dr. Rohit Cariappa, Dr. Archana Bilagi, Dr. Pardeep, and Dr. Deepa Bhat.
30th: Manipal — Participated as a speaker at the National IEM Metabolic Meet (Mitochondrial Cytopathies: A Miniscule Initiative), organized by the Centre of Excellence in Inborn Errors of Metabolism and the Departments of Pediatrics, Medical Genetics, and Biochemistry at Kasturba Medical College.
2nd: Jabalpur — Organized a Child Health Awareness Seminar with Lions Clubs Jabalpur at Hotel Kalchuri, with Chief Guest Jabalpur Collector Dr. Ilaiyaraaja T. and over 150 participants.
29th: Hosted a global Newborn Screening Awareness Month webinar with IEM Support Charitable Trust under the theme Newborn Screening: Growing Stronger. Featured insights on mandatory screening for CH, G6PD, hearing, and critical congenital heart disease from leading experts, including Dr. Ratna Puri, Dr. Saurabh Dani, Dr. Madhulika Kabra, Dr. Seema Kapoor, Dr. Shubha Phadke, Dr. Rohit Cariappa, Dr. Chaitanya Datar, Dr. Dipanjana Datta, Dr. Deepa Bhat, and Dr. Ankur, with 50 attendees.
27th: Jaipur — Organized an awareness meet and press conference with patient families to observe Newborn Screening Awareness Month.
22nd: Participated in a roundtable panel discussion webinar titled Importance of Inborn Errors of Metabolism (Newborn Screening) – The Indian Context, organized by Synergy Medical Systems. Panelists included Dr. Usha Deve, Dr. Priyanshu Mathur, Dr. Leslie Edward S. Lewis, Dr. Suprava Patel, and Marine Bellefroid.
21st: Jaipur — Organized a music program, food drive, and new clothes distribution in association with Lions Club Jaipur and the MG Hospital Childhood Cancer Department at Kavita Cancer Care Home, with around 100 parents, members, and children attending.
27th: Jaipur — Organized a health awareness seminar for girls at a senior secondary girls' school in Malviya Nagar, in collaboration with Lions Club Jaipur Adarsh Nagar, Jaipur Diamond, and Hope NGO. Key speakers were Dr. Neha Agarwal and Dr. Nitika Gupta.
14th: Jaipur — Hosted an Azadi Ka Amrit Mahotsav get-together with foundation parents at Lords Plaza Jaipur, attended by 10 parents and 3 children.
31st: Jaipur — Organized a Healthcare Seminar at Fortis Hospital alongside Lions Clubs, featuring key presentations by Dr. Pankaj Anand, Dr. Ashwin Sharma, and Dr. Sanjay Choudary.
1st: Mysuru — Participated in the 7th Annual International Hybrid Conference at JSS Medical College, JSS Academy of Higher Education and Research, Mysuru, Karnataka.
1st: Jaipur — Distributed new clothing to 78 newborn babies at Janana Hospital, Jaipur, through a joint effort by MERD India Foundation and Lions Club Jaipur Adarsh Nagar.
8th: Jaipur — Participated in a World Thalassemia Day program at Mahatma Gandhi Hospital, Jaipur, organized by the South East Asia Institute of Thalassemia and MG Hospital.
28th: New Delhi — Participated in a seminar launching the Pulse Oximetry Screening & Roll-out Plan for Streamlining the Management of Neonates and Children with Congenital Heart Diseases at the G.B. Pant Hospital Auditorium.
22nd: Participated in the IndoUSrare webinar Newborn Screening – The Indian Perspective, featuring Dr. A. Radha Rama Devi, Dr. Arun K. Singh, and genetic disease pioneer Dr. I.C. Verma.
27th: Jaipur — Observed Rare Disease Day at Umeed Special Children School with support from Lions Club Jaipur Adarsh Nagar. Over 40 attendees and children participated, receiving supplies and sensory support items.
19th: Organized a webinar with Lions Club Jaipur Adarsh Nagar and Lions Club Jaipur Maitrai on Gastroenterology and Hepatology Problems in Children, featuring Dr. Lalit Bharadia as the key speaker.
18th: Participated in a webinar on the Role of Obstetricians in Newborn Screening, with presentations by Dr. Prakash Gambhir and Dr. Saurabh Dani.
21st: Kolkata — In honor of Inborn Errors of Metabolism (IEM) Day, organized a hybrid seminar/webinar with IEM Support Charitable Trust and ORDI at Conclave 216, AJC Bose Road. Key speakers included Dr. Ratna Puri, Dr. Arun Mangalik, Dr. Bikramjit Das, Dr. Sanjukta Das, and Dr. Dipanjana Datta. Attended in-person by 38 participants (including 8 parents) and online by 56 webinar attendees.
15th: New Delhi — Participated in a Newborn Week Advocacy Day meeting at Hotel Pride Plaza, Aerocity, organized by NNF India in collaboration with UNICEF, IAP, and FOGSI.
28th: Participated in a webinar titled Vital Pillar of Rare Diseases Policy and Enhancing Standards of Care, organized by the US India Foundation and PerkinElmer India.
20th: Participated in the India Rare Disease Summit virtual event, focusing on national NBS policy and global perspectives regarding the National Rare Disease Policy in India 2021.
30th: Participated in a webinar focused on Inborn Errors of Metabolism, organized by Azzurra Pharma.
26th: Participated as a panelist in the National Newborn Screening Symposium organized by the National Neonatal Forum India (NNFI). Spoke in the panel discussion The Way Forward (Newborn Screening: Towards a Uniform Screening) alongside co-panelists Dr. Rohit Cariappa, Dr. Neerja Gupta, and Dr. Milind Shah.
25th: Participated in the Indo-German Metabolic Meet 2021 webinar, organized by Kasturba Medical College, Manipal.
8th: Supported and participated in the Newborn Screening Advocacy Meeting organized by NNF India, UNICEF, WHO, GOI, ISPAT, ISOPARD, ICT, and USAID.
7th: Jaipur — Organized a Healthy Children webinar with Lions Clubs and ORDI. Featured keynote presentations from Jaipur specialists Dr. Rajesh Pathak, Dr. Satyendra Katewa, Dr. Swati Ghate, and Dr. Sharad Sharma.
24th: Jaipur — Organized a Healthy Children, Healthy Nation webinar with Lions Clubs Jaipur focusing on childhood cancer and newborn screening, featuring Dr. Satyendra Katewa (Manipal Hospital) and Dr. Rajesh Pathak (Narayana Hrudayalaya).
5th: Participated in a webinar titled Indian Contribution to Disease Gene Discovery, organized by SGPGI in memory of the late Dr. S.S. Agarwal.
3rd: Participated in the 6th Annual International Conference webinar of the Board of Genetic Counseling India (BGCI).
17th: Participated in a webinar titled Neonatal Testing for Rare Diseases: The Power of Knowing.
29th: Participated in Session 6 of the ORDI–AOCN Webinar Series, titled Linking Phenotypes to Diagnosis.
22nd: Participated in a Thalassemia webinar organized by the Indian Dietetic Association (Jaipur Chapter), featuring presentations by Dr. Rajiv Kumar Bansal and Dietitian/Nutritionist Surbhi Pareek.
15th: Participated in Session 4 of the ORDI–AOCN Webinar Series, focusing on Mitochondrial Diseases.
8th: Participated in the ORDI–AOCN Webinar on Metabolic Epileptic Encephalopathies.
28th: Observed Rare Disease Day through two primary initiatives:
Participated in the Global Rare Disease Conference (GRDC) 2021, an initiative by the People to People Health Foundation co-hosted by NITI Aayog.
Visited Seth Anandi Lal Poddar Institute for the Deaf and Dumb (सेठ आनंदी लाल पोद्दार मूक बधिर संस्थान) in Jaipur, donating bedsheets, drawing boxes, lentils, sugar, fruits, and biscuits for 60 special-needs children.
Awareness Poem:
आज दुर्लभ रोग का प्रतीक दिवस है
आओ मिल कर शपथ उठायें
इन रोगों की जागरुकता फैलाये
जनजन तक अपनी बात पहुंचाये
कई चेहरो पर मुस्कुराहट बिखरायें
कश्ती रहती है हमेशा भंवर में
आओ मिल कर किनारे पहुंचाये
21st: Participated in a live televised panel discussion on News X titled Rare Disease: Indian Scenario.
20th: Participated in a Virtual CME on LSDs in South Asia: Challenges and Priorities, featuring key speaker Dr. Ashok Vellodi (Former Consultant Pediatrician, Metabolic Unit, GOSH).
22nd: Participated in the North Region Rare Diseases Consultation 2021 on developing a rare disease blueprint for India.
20th: Organized a Healthy Children webinar with Lions Club Jaipur Adarsh Nagar covering common pediatric conditions in children aged 0–18 (such as fever, infections, migraines, colds, coughs, pneumonia, skin infections, and strep throat). Key presentations were delivered by Dr. Deepak Shivpuri and Dr. Sourabh Singh.
4th: Participated in the webinar Neurological Disorder Genetics and Microbiome Perspective, featuring Dr. Manisha Goyal, Dr. Pawan Gupta, and Dr. S.K. Chikara.
25th: Participated in the ORDI Webinar on Global Garrod Day. Expert panelists included Dr. Sumita Danda, Dr. Sandhya P., Dr. Joe Thomas, Dr. Tamil Selvam, and Dr. Isaac Jebaraj, moderated by Dr. Debashish Danda.
21st: MERD India Foundation, alongside the IEM Support Charitable Trust, organized an Inborn Errors of Metabolism (IEM) Day webinar. Over 100 participants attended, featuring presentations by Dr. Anil Jalan, Dr. Anupam Sibal, Dr. Rohit Cariappa, Dr. Chaitanya Datar, Dr. Priyanshu Mathur, and Mrs. Geetanjali Kunte (Dietitian).
26th: Participated in the IAP webinar titled Understanding the IEM Algorithm, featuring Dr. Anil Jalan.
25th: Participated in the Indian Rett Syndrome Foundation webinar focused on music therapy.
15th: Participated in the IndoUSrare webinar Rare Disease Patient Engagement with FDA, featuring guest speaker James Valentine, JD, MHS.
27th: Organized a webinar with the Indian Rett Syndrome Foundation and IEM Support Charitable Trust titled Beyond Medicine and Diet for Rare Diseases, addressing physiotherapy, occupational therapy, and behavioral/psychological support for children with rare conditions like IEM and Rett Syndrome. Key speakers included Dr. Shashi Ranjan (Lok Nayak Hospital) and Ms. Auroba Kabir (Enso Wellness).
25th: Participated in the ORDI webinar Rare Disease Clinical Research: Challenges and Solutions to Conduct Studies in Rare Disease Indications, featuring Dr. Ali Smyth.
20th: Organized a caregiver experience webinar with the IEM Support Charitable Trust, providing a platform for parents to share their insights, daily routines, and challenges in raising children with rare conditions.
18th: Participated in the webinar Clinical Trials for Rare Diseases: What Patients and Caregivers Need to Know, featuring Capt. Smitha Naidu and Ms. Swetha Pradhan.
6th: Participated in the IAPTCB 44th scheduled Zoom webinar on Basic Approach to IEM in Children and Newborns presented by Dr. Anil Jalan and moderated by Dr. Prajnya Ranganath.
5th: Participated in the ORDI Care for Rare webinar Battling for Genetic Counseling: The Promises and the Perils, presented by Dr. Dipanjana Datta.
14th: Participated in the webinar Newborn Screening for Obstetricians: Awareness to Implementation – Part 3.
24th: Participated in the webinar Newborn Screening for Obstetricians: Awareness to Implementation – Part 2.
11th (Evening): Participated in the webinar IEM Mimicking Genetic Problems & Genetic Screening, featuring Dr. Anil Jalan and Dr. Tejal Rishbud (Mumbai).
11th (Afternoon): Participated in the webinar Implementing Newborn Screening in Clinical Practice: Are We Utilizing the Full Potential?, featuring Dr. Chaitanya Datar and Vaishali Madkaikar (Pune).
11th (Morning): Participated in the ORDI Care for Rare webinar Newborn Screening in Sick Newborns, presented by Dr. Shamik Ghosh (Kolkata).
3rd (Evening): Participated as a panelist in the webinar Newborn Screening for Obstetricians: Awareness to Implementation alongside Dr. Ashish Mehta and Dr. Darshan Wadekar, moderated by Dr. Saurabh Dani.
3rd (Morning): Participated in the ORDI Care for Rare webinar on newborn screening, featuring Chief Guest Dr. Arvind Shenoy (Cloudnine Hospital, Bengaluru).
2nd: Participated in the Board of Genetic Counseling India (BGCI) 5th Annual Conference 2020: Genomics to Mankind – Integrating Genetic Education, Counseling and Public Health.
29th: Lucknow — Participated in and supported Rare Disease Day celebrations organized by the Department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGIMS), at the Telemedicine Hall, SGPGIMS.
22nd: Bengaluru — Participated in and supported the Race for 7 rare disease awareness run organized by the Organization for Rare Diseases India (ORDI).
16th: Pune — Participated in and supported the Race for 7 rare disease awareness run organized by ORDI.
25th: Jaipur — Participated in a Workshop and Awareness Program on Rare Diseases and LSD, organized by the Lysosomal Storage Disorders Support Society (LSDSS) and Santokba Durlabhji Memorial Hospital (SDMH) Jaipur at the SDMH Auditorium.
6th: New Delhi — Participated in the Foundation Ceremony of MISSION NEEV (Neonatal Early Evaluation Vision) at the Auditorium, Maulana Azad Medical College.
24th: Nagpur — Organized an Inborn Errors of Metabolism (IEM) Day event at Hotel Hardeo, supported by Nelson Mother and Child Care Hospital, NNF, and IAP.
21st: Jaipur — Observed Inborn Errors of Metabolism (IEM) Day with Jaipur parents at Hotel Park Regent.
12th: New Delhi — Participated in a seminar on Rett Syndrome organized by the Indian Rett Syndrome Foundation at Safdarjung Hospital (Ansari Nagar East, near AIIMS Metro Station).
5th: Jaipur — Organized a Health Awareness Program at Eternal Hospital as part of Lions Club Service Week.
25th: Jaipur — Organized a Newborn Screening Awareness Program at C.K. Birla Hospital.
21st: Varanasi — Participated as a panelist in the Newborn Screening Session of the ISAR ISPAT Conclave at Hotel Taj Ganges.
1st: Indore — Organized an awareness program with Choithram Hospital & Research Centre, IAP Indore, and the IEM Support Charitable Trust at the Choithram Hospital Auditorium.
26th: Hyderabad — Participated in the NeuroPedicon 2019 conference, attending the workshop on the Management of Neurometabolic Disorders at Hotel Park Hyatt.
16th: New Delhi — Participated in the Rare Global Advocacy Leaders (RGAL) Meeting at Four Points by Sheraton.
13th: New Delhi — Participated as a panelist in Session 4 (Role of Patient Groups – Awareness and Education) on Day 1 of the 7th International Conference on Rare and Undiagnosed Diseases at Hotel Leela Ambience, Gurugram.
2nd: Jaipur — On World Autism Awareness Day, children with special needs from various institutions performed at Albert Hall. The event was organized by the Department of Archaeology and Museum (Government of Rajasthan) in collaboration with the D-Naj Institute to promote autism awareness.
17th: New Delhi — Participated in the Race for 7 rare disease awareness run/walk at IGIB Okhla.
3rd: Bikaner — Organized a mass awareness march for rare diseases alongside IAP Bikaner, Lions Club Jaipur Adarsh Nagar, Lions Clubs Bikaner, and the IEM Support Charitable Trust. Over 100 participants joined the march, which began from Bhraman Path, Sadul Ganj Road.
28th: Jaipur — Supported Rare Disease Day by organizing a symbolic Race for 7 awareness run/walk alongside Lions Club Jaipur Adarsh Nagar at Jawahar Circle Garden, with over 70 participants attending.
19th: Pune — Participated as a panelist in the Care for Rare discussion during ISIEM 2019.
15th: New Delhi — Organized an awareness event with the Division of Genetics (Department of Pediatrics) at AIIMS, New Delhi, and the IEM Support Charitable Trust at the All India Institute of Medical Sciences.
9th: Ahmedabad — Organized a CME on Inborn Errors of Metabolism 2018 in collaboration with the FRIGE Institute of Genetics, IAP Ahmedabad, and AOP Ahmedabad at the Ahmedabad Management Association (AMA).
21st: Jaipur — Organized the 4th Inborn Errors of Metabolism (IEM) Day event, including a press conference, at the Golden Tulip Hotel.
14th: Bengaluru — Participated in an Awareness Program for Rett Syndrome held at NIMHANS.
6th: Jaipur — Organized an Awareness Program for Rare Diseases in Children in association with Surya Hospital Jaipur and Lions Club Adarsh Nagar at Surya Hospital.
2nd: Jaipur — Organized a Newborn Screening Awareness Program in association with Mahatma Gandhi Medical College & Hospital and Lions Club Jaipur Adarsh Nagar.
22nd: Jaipur — Participated in the 4th Annual CME on Pediatric Gastroenterology, Hepatology & Nutrition at MG Hospital, Jaipur.
30th: Ajmer — Organized a CME titled Rare Disorders / We Care for Rare in association with IAP, FOGSI, and JLN Medical College, Ajmer, at Hotel Cross Lane.
17th: Patna — Participated in the FOGSI ISPAT Conference on Genetics & Fetal Medicine held at Hotel Lemon Tree Premier.
29th: Jaipur — Hosted and organized the 3rd National Patient Advocacy Group (PAG) Leader Meeting, convened by the Organization for Rare Diseases India (ORDI), to discuss the National Rare Disease Policy.
25th: Jaipur & Bengaluru — Supported Rare Disease Day through two simultaneous events:
Jaipur: Organized a symbolic Race for 7 mass awareness run/walk alongside Lions Club Jaipur Adarsh Nagar at Shivaji Park (Vijay Path, Tilak Nagar), with over 100 participants.
Bengaluru: Participated in the Race for 7 mass awareness run/walk organized by ORDI.
4th: Lucknow — Participated in the ACBICON 2017 conference at the Scientific Convention Centre, King George's Medical University (KGMU).
21st: New Delhi — Organized the 3rd Inborn Errors of Metabolism (IEM) Awareness Day and 2nd Saved Babies Day in association with Maulana Azad Medical College (MAMC) and IEM Support Charitable Trust at Delhi.
29th: Bengaluru — Participated in the Newborn Screening Symposium 2017 at The Grand Magrath Hotel.
28th: New Delhi — Participated in the IEM Awareness Program for the North Zone (covering Delhi-NCR, Rajasthan, UP, Punjab, and Haryana) at the India Habitat Centre, which featured the launch of the Diet 4 Life initiative by the Food Safety and Standards Authority of India (FSSAI).
16th: New Delhi — Attended the National Conclave on Nutrition Security: Partnership & Convergence, hosted by FSSAI at FDA Bhawan to mark World Food Day 2017.
24th: Manipal — Participated in the Indo-German Metabolic Meet at Dr. T.M.A. Pai Hall.
16th: Pune — Attended a clinical practice session titled Inborn Errors of Metabolism – Simplified for Practice at Deenanath Mangeshkar Hospital.
23rd: Bikaner — Organized and supported a CME with IAP Bikaner on Newborn Screening and Inborn Errors of Metabolism in the Indian Perspective.
16th: Jaipur — Participated in the 9th Ped Gastro Update CME at the Santokba Durlabhji Memorial Hospital (SDMH) Auditorium.
8th: New Delhi — Attended a Patient Advocacy Group (PAG) meeting at The United Service Institution of India to discuss the National Policy for Treatment of Rare Diseases.
27th: New Delhi — Participated in the National Initiative for Rare Diseases Consultation Meeting at the India International Centre.
12th: New Delhi — Attended the inaugural ceremony of the special IEM diet initiative at the India Habitat Centre — a collaborative project between the medical fraternity, FSSAI, nutritionists, and industry partners to make specialized metabolic diets available for children with IEM.
2nd: Navi Mumbai — Participated in the CME Newborn Screening: Adding Quality, Changing Lives.
28th: New Delhi — Supported and participated in the 1st Saved Babies Day in India, held at the Maulana Azad Medical College Auditorium.
26th: Varanasi — Sponsored and participated in a CME on Inborn Errors of Metabolism at the Conference Hall, New Pediatric Building, Department of Pediatrics, IMS-BHU.
28th: Ahmedabad — Participated in Rare Disease Day 2017 ("Join us in making the voice of rare diseases heard") at the Ahmedabad Management Association, organized by FRIGE's Institute of Human Genetics and the Academy of Pediatrics (Gujarat Branch).
27th: Jaipur — Celebrated Rare Disease Day with patient families and supporters at Hotel Lords Plaza.
26th: Bengaluru — Supported and participated in the Race for 7 rare disease awareness run organized by the Organization for Rare Diseases India (ORDI).
23rd: New Delhi — Attended the meeting Evolving Policies for Cure of Rare Diseases at Jawaharlal Nehru University (JNU).
12th: Chennai — Participated in the 4th National Conference of the Indian Society for Inborn Errors of Metabolism (ISIEM).
21st: Bengaluru — Participated in the 54th National Conference of the Indian Academy of Pediatrics (PEDICON 2017).
15th: New Delhi — Participated in the 13th Biennial National Congress hosted by the ISPAT Delhi Chapter at the Constitution Club of India.
8th: Surat — Attended the CME Genetic Applications in Clinical Practice at the Taj Gateway.
27th: Pune — Participated in and supported the symposium Inborn Errors of Metabolism: A Clinical Approach, organized by IAP Pune at the Bharati Hospital Auditorium.
20th: Jaipur — Organized the 2nd Inborn Errors of Metabolism (IEM) Day Symposium in association with Neo Clinic Jaipur and Lions Club Jaipur.
16th: New Delhi — Attended an Awareness Meet for Rett Syndrome at Dr. Ram Manohar Lohia Hospital (Baba Kharak Singh Marg).
15th: Noida — Participated in a CME on Inborn Errors of Metabolism (IEMs) and Newborn Screening at Jaypee Hospital (Sector-128, Wish Town, Gautam Buddh Nagar).
11th: Hyderabad — Participated in the Newborn Screening Symposium 2016 at The Golkonda Hotel, Banjara Hills.
10th: Vadodara — Organized a CME on Inborn Errors of Metabolism (IEMs) and Newborn Screening in association with The Maharaja Sayajirao University of Baroda and K.G. Children's Hospital at M.S. University, Pratapgunj.
10th: Ahmedabad — Attended a CME on Metabolic Disorders at Zydus Hospital (Near Sola Bridge, S.G. Highway).
29th: Jaipur — Organized a CME on metabolic health in association with Narayana Hrudayalaya Hospital at their Jaipur facility.
22nd: Kota — Organized a CME in association with IAP and FOGSI Kota around the theme "Metabolic Disorders in Children – Creating Public Awareness – Role of Doctors."
8th: Jaipur — Sponsored and participated in World Thalassemia Day celebrations organized by SEAIT and Prem Niketan Hospital at the Manav Seva Sangh Auditorium (Jawahar Circle).
24th: Jaipur — Participated in the Workshop on Pediatric Gastro Interventions at MG Hospital.
27th: Mumbai — Participated in the CME All About Inborn Errors of Metabolism, organized by We Are Special (an initiative of Shubhlahari Pratishthan) at Sir H.N. Reliance Foundation Hospital and Research Centre.
29th: Jaipur — Celebrated World Rare Disease Day with special children and community members at Rajasthan Netraheen Kalyan Sangh.
28th: Bengaluru — Supported and participated in the inaugural Race for 7 rare disease awareness run organized by the Organization for Rare Diseases India (ORDI).
22nd: Bengaluru — Participated in a CME on Metabolic Disorders in Neonates at Cloudnine Hospital (Old Airport Road).
13th: Jodhpur — Attended the 2nd National Conference of the Indian Academy of Medical Genetics, jointly organized by AIIMS Jodhpur, Dr. S.N. Medical College, and IAP Marwar Branch.
27th–29th: Jaipur — Participated in the 1st International Conference on Pediatric Rare Diseases and 17th National Conference of IAP Intensive Care Chapter (NCPCC 2015) at the B.M. Birla Science & Technology Centre.
21st: Hyderabad — Organized and marked the very first Inborn Errors of Metabolism (IEM) Day event at Luminous One Continent Hotel, Abids.
25th: New Delhi — Attended an Awareness Program for Rett Syndrome at Vardhman Mahavir Medical College & Safdarjung Hospital.
22nd: New Delhi — Participated in the Consultative & Policy Meet on Newborn Screening, organized by the National Neonatology Forum (NNF) at the India Habitat Centre.
8th: New Delhi — Attended the conference Realizing the Potential of Rare Disorders in India at the United Service Institution of India.
6th: Mumbai — Participated in a Round Table Discussion on Newborn Screening, organized by the Perinatology Committee of FOGSI.
26th: Jodhpur — Organized a CME titled Rare Disorders / Wake-up Call at Hotel Shriram Excellency.
28th: Ahmedabad — Participated in a Workshop on Perinatology at the Ahmedabad Management Association.
27th: Pune — Organized a Parents-Doctor Round Table Discussion on the Hurdles of Managing Our Children Suffering from IEMs.
18th: Bengaluru — Attended a discussion on Inborn Metabolic Disorders Requiring Therapeutic Dietary Products at the Centre for Human Genetics, Biotech Park (Electronic City Phase I).
5th: Bengaluru — Supported and participated in the CME Rare Diseases – A Practical Approach alongside ORDI, NNF India, and Cloudnine Hospital at Gold Finch Hotel.
22nd: Jaipur — Attended a Pediatric Gastro CME at Mahatma Gandhi Medical College & Hospital.
1st: Jaipur — Organized a symposium on Rare Diseases: Need of the Hour in association with SEAIT, Prem Niketan Hospital, and ORDI at the Manav Seva Sangh Auditorium (Jawahar Circle).
14th: Pune — Participated in PediGen 2015 at Deenanath Mangeshkar Hospital & Research Center.
15th: Jaipur — Supported the Clinic for Rare Diseases (Department of Pediatrics, SMS Medical College) in organizing a discussion on Newborn Screening for Inborn Errors of Metabolism at Hotel Ramada.
29th: Udaipur — Organized a CME on Newborn Screening for Inborn Errors of Metabolism and Genetic Disorders at Geetanjali Medical University Auditorium. On this occasion, the publication Essentials of Inborn Metabolic and Genetic Disorders was officially released.
12th: New Delhi — Attended an awareness program for Rett Syndrome held at G.B. Pant Hospital.
20th–21st: Hyderabad — Participated in the International Conference on Inborn Errors of Metabolism (ICIEM 2014) at Hotel Taj Krishna.
14th: New Delhi — Attended the 2nd Newborn Screening Symposium at Amaltas Hall, India Habitat Centre.
27th: Ahmedabad — Attended a CME on Practice Guidelines in Neonatal and Pediatric Liver, Metabolic, and GI Diseases at the Ahmedabad Management Association (AMA).
22nd: Jaipur — Participated in a CME on Inborn Errors of Metabolism organized by the National Neonatology Forum (NNF) Jaipur Chapter at the Hilton Hotel.
18th: New Delhi — Attended the official launch of the Organization for Rare Diseases India (ORDI) at the Constitution Club of India.
16th: Jodhpur — Organized a round-table discussion titled Newborn Screening: How to Begin at Hotel Shriram Excellency.
24th: Ahmedabad — Participated in the International Conference on Human Genetics (ISHG 2014) at the Ahmedabad Management Association (AMA).
2013-Hospitals/Doctors meet 8
2013- Activities Conducted - 06
| 2012 Events Summary | ||||
|
City |
Date | Event/Topic | Host Institution | |
| Mumbai | 30-Sep-12 | Newborn Screening Symposium | Kokilaben Dhirubhai Ambani Hospital (KDAH) | |
| Vellore | 21-Jul-12 | Symposium on "Inborn Errors of Metabolism (IEM): Protean Manifestations" | Christian Medical College (CMC) | |
| Jodhpur | 22-Apr-12 | Thalassa-Gen 2012 | Dr. S.N. Medical College | |
| Chennai | 27-Jan-12 | Genetics Conference (GMDMM 2012) |
SRM University
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Hospitals/Doctors meet -9 Activities Conducted in 2012 =04 |