IEM DAY
Inborn Errors of Metabolism Day (IEM Day)
Inborn Errors of Metabolism Day (IEM Day) in India is celebrated on November 21st to raise awareness about IEM diseases, which most people aren't familiar with, and to improve access to treatment. In fact, treatment for many IEM diseases is insufficient, and some people's quality of life is greatly hindered by inequality, simply because people have never heard of their disease or don't understand it and the patients' needs.
Since 2011, MERDIndia has been creating many platforms to raise awareness about IEMs and provide informative support to parents, as well as coordinating events for IEM Day at the national level.
Inborn Errors of Metabolism (IEMs) comprise a group of disorders in which a single gene defect causes a clinically significant block in a metabolic pathway, resulting in either an accumulation of the substrate behind the block or a deficiency of the product. All IEMs are genetically transmitted, typically in an autosomal recessive or X-linked recessive fashion.
MERDINDIA organized the first IEM Day on November 21, 2015, at the Luminous One Continent Hotel in Hyderabad. A total of 32 people attended the event.
The 2nd IEM Day was organized with Neo Clinic Jaipur & Lions Club Jaipur on November 20, 2016, at Neo Clinic Jaipur, Rajasthan. Inborn Errors of Metabolism Day (IEM Day) in India is marked on November 21st to raise awareness about IEM and to improve access to treatment. This effort was held on November 20th in reference to that. 50 people attended the symposium.
The 3rd IEM Awareness Day and 2nd Saved Babies Day were organized in association with Maulana Azad Medical College Delhi and IEM Support Charitable Trust Delhi on November 21, 2017, at Maulana Azad Medical College Delhi. 75 people, along with 22 parents, attended the IEM Day.
The 4th IEM Day was organized on November 21, 2018, at the Golden Tulip hotel with a press conference. Eight media people along with 10 parents attended an awareness talk about inborn errors of metabolism.
The 5th IEM Day was organized with support from Nelson Mother and Child Care Hospital, NNF, and IAP on November 24, 2019, at Hotel Hardeo in Nagpur. Around 80 people, along with 8 parents, attended the event.
IEM Day was also observed with Jaipur parents on November 21st at Hotel Park Regent Jaipur.
Due to Covid-19 in 2020, MERD India, along with IEM Charitable Support Trust, organized the 6th Inborn Errors of Metabolism Day as a webinar. Dr. Anil Jalan, Dr. Anupam Sibal, Dr. Rohit Cariappa, Dr. Chaitanya Datar, Dr. Priyanshu Mathur, and Mrs. Geetanjali Kunte, a dietitian, were the key speakers. Over 100 people attended the webinar.
Recording of the event:
https://drive.google.com/file/d/1WcK_4OgOeho4pBqA2wTFUUhJPiU5LXQh/view?usp=sharing
7th Inborn Errors of Metabolism Day 2021
A seminar and webinar were organized with IEM Support Trust and ORD INDIA at The Conclave, 216, Acharya Jagadish Chandra Bose Road in Kolkata. The key speakers were Dr. Ratna Puri, Dr. Arun Mangalik, Dr. Bikramjit Das, Dr. Sanjukta Das, and Dr. Dipanjana Datta. 38 people, along with 8 parents, were present at the seminar, and 56 people attended the webinar.
8th Inborn Errors of Metabolism Day 2022
November 21st, Jaipur: IEM Day was observed at Mahila Chikitsalaya. Sixty new woolens were provided to newborns, and discussions about inborn errors of metabolism disease were held with child care doctors. Great support was provided by the hospital management, Dr. Sunil Gothwal, and Dr. Rinku Saini.
November 20th, Mysore: Inborn Errors of Metabolism Day was organized with a seminar supported by JSS, IAP, ORDI, and IEM Support Trust. More than 80 people, along with 9 parents and 4 children, attended the seminar. Dr. Seema Kapoor, Dr. Rohit Cariappa, Dr. Archana Bilagi, and Dr. Deepa Bhatt were the key speakers.
9th Inborn Errors of Metabolism Day 2023
The Merdindia Foundation, along with the Department of Pediatrics, Medical Genetics Division at JIPMER Pondicherry, and supported by IEM Support Charitable Trust, organized IEM Day at the JIPMER Pondicherry Mini Auditorium on November 19, 2023. More than 80 people attended the program, which focused on the sensitization of medical students. It was a great, successful seminar, and all credit goes to Dr. Reena Gulati and her team. Key speakers were Dr. Kuldeep Singh from Jodhpur, along with Dr. Adhishivam, with great blessings from Dr. Vikram Kate and Dr. Thapa. It was the best IEM Day observed since 2011. Thank you, JIPMER Pondicherry, for your support.
10th Inborn Errors of Metabolism Day 2024
IEM Day was organized with Apollo Hospital in Bhubaneswar. It was a great, successful seminar, and around 32 medical professionals attended the event. Excellent support was provided by Dr. Alok Shrivastava, Dr. Debashish, Dr. J.P. Pani, Dr. R.K. Joshi, and Dr. Megmala Sadukhan.
Some Facts about IEMs and Genetic Disorders in India
IEMs were observed in 1 in every 500 to 1,000 newborns.
India accounts for a staggering 29% of global newborn deaths on their very first day of birth, with nearly 40% of neonatal deaths happening on the first day of birth in India.
Experts point out that a lot of work has to be done to improve newborn health in India, as nearly 5-15% of newborns are sick due to metabolic diseases. A major group of these babies is left with irreversible complications of physical and mental impairment, and some die if affected by severe forms of these conditions.
Out of every 100 babies born in this country annually, 6 to 7 have a birth defect. In the Indian context, this would translate to 1.7 million birth defects annually and would account for 9.6% of all newborn deaths. With a large birth cohort of almost 26 million per year, India would account for the largest share of birth defects in the world. This would translate to an estimated 1.7 million babies born with birth defects annually. Birth defects account for 9.6% of all newborn deaths and 4% of under-five mortality. Developmental delays affect at least 10% of children.
India is a single country of multiple cultures and genetic traits. The research and data from one state do not necessarily apply to another region. The incidence of CAH is thought to be higher in Southern India, whereas the incidence of G6PD is thought to be highest in Punjab and Gujarat. Thalassemia has its highest incidence in Gujarati. Disorders mimicking methylmalonic acidemia (MMA) are thought to be higher in vegetarians in south India than in north India. These geographical variations and their understanding are very important in planning the health programs of a country.
Note: The facts provided in this document have been sourced from various websites and articles. By no means do we claim to be exhaustive or up-to-date.