Events
Rare Disease Day   

 Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.
 
1= Rare Disease Day in India was celebrated for the first time in India on February 28th 2010 held at Sir Gangaram Hospital in New Delhi.
 
2=.2nd Rare Disease Day on 28th February 2011 held at Kamaraj Memorial Hall Chennai ,
 
3=3rd Rare Disease Day on 29 February 2012 held at Nehru Science Centre, Mumbai,
 
4=4th  Rare Disease Day  on 28 February 2013 held at  Maulana Azad Medical College, New Delhi.
 
5=5th Rare Disease day   on 28 February 2014  was celebrated in India at many city like  Bangalore, New Delhi, Mumbai, Chennai, Jaipur, Kolkata, Calicut, Kasangadu, Hyderabad.
 
6=6th  Rare Diseases Day 28 Feb  2015, Rare Diseases Day  was celebrated  in India in many city like   Jaipur, Delhi, Bangalore, Mannankadu, Hyderabad, Chennai,
 
7= 7th, Rare Diseases Day  was celebrated  in India in many city like   Jaipur, Delhi, Bangalorecalicut. GUNTUR,CHENNAI .

Source.http://www.rarediseaseday.org/events/world &http://www.lsdss.org/

8th Rare Diseases Day Celebrate at Hotel Lords Plaza Jaipur  on 27 Feb 2017 ,16 parents from Jaipur share views together.

 
 9th  World Rare disease day by observed by   unique symbolic  Race for 7 a mass awareness run/walk on 25 Feb 2018 at Shivaji Park Vijay path Tilak Nagar, Jaipur, Rajasthan, More than 100 people well attented and run/walk for Awareness
 
 10th Rare Disease Day
1,MERDINDIA support World Rare disease day by organized with lion calub jaipur   unique symbolic  Race for 7 a mass awareness run/walk on 28 Feb 2019 at the Jawahar Circle Garden, Jaipur, Rajasthan, More than 70 people well attended and run/walk for Awareness.
2, MERDINDIA organized also  with IAP bikaner , lion club  adarsh nagar  jaipur and lion clubs bikaner and IEM support  Charitable Trusts   unique symbolic   mass awareness March for rare disease  on  3rd march 2019 from Bhraman Path Sadul Ganj Rd, Shardul Colony, Bikaner,  , More than 125 people  participated  for Awareness. 
 
 year -2020
Participated and Support Rare disease Day Organised by  the department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences, at Telemedicine hall, SGPGIMS on 29 Feb 2020
 

 year 2021  we observed
 
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 मुस्कराहट बिखरायें
कश्ती रहती है हमेशा भंवर में
आओ मिल कर किनारे पहुंचाये
At Seth Anandi Lal Poddar Institute Of Deaf Dumb (सेठ आनंदी लाल पोद्दार मूक बधिर संस्थान)Special education school in Jaipur, Rajasthan Jawahar lal Nehru Road,Near Trimuriti circle, Jaipur, Rajasthan 302004
merdindia foundation gave for 60 children ,Bed sheet, drawing box, Dal and sugar,and fruits and biscuits
 
 
 
 
  
 
 
 
 
 
 
IEM DAY   

Inborn Errors of Metabolism Day (IEM Day ) in India is marked  on the 21 November to raise awareness about IEM diseases that most people will not know of, as well as to improve access to treatment.In Fact that treatment for many IEMS diseases is insufficient, and some peoples quality of life is greatly hindered by inequality, simply because people have never heard of their disease, or do not understand the disease and the patients needs.
 
Since 2011, MERDIndia has been putting in many  platform to rise awareness about IEMS  AND  informative support to   parents , as well as Co-Ordinating events for IEM Disease Day at  national level.
 
Inborn Errors of Metabolism (IEM) comprise a group of disorders in which a single gene defect causes a clinically significant block in a metabolic pathway resulting either in accumulation of substrate behind theblock or deficiency of the product. All IEMs are all genetically transmitted typically in an autosomal recessive or X-linked recessive fashion.
 
MERDINDIA  organized First  IEM DAY  on 21 Nov 2015 at Hyderabad ,  total 32 people well attended  the event.  
 
2ND IEMDAY Organized with  Neo Clinic Jaipur &Lions Club Jaipur at on 20th November 2016 at  Neo Clinic Jaipur, Rajasthan ,Inborn Errors of Metabolism Day (IEMDay) in India is marked on the 21 November to raise awareness about IEM and to improve access to treatment. This is an effort in reference to it being held on 20th November.50 people well attend the symposium.
 
 Organized 3rd IEM Awareness day and 2nd Saved Babies Day Association with Maulana Azad Medical College Delhi and IEM Support Charitable Trust Delhi on 21 November 2017 at Maulana Azad Medical College Delhi .75 people along with 22 parnts well attend the IEM DAY.  
 
Organized 4th IEM day  on 21 November 2018 at golden tulip hotel with press conference  8 media people along with 10 parents attended Awareness talk about inborn errors of metabolism.   
 
Organized 5th IEM DAY with support by Nelson Mother and Child Care Hospital , NNF , IAP, on 24th NOV 2019 at Hotel Hardeo Nagpur, Around 80 peoples along with 8 parents well attend the day 
Observed also  Inborn Errors of Metabolism Day with Jaipur parents on 21st November at Hotel park Regent Jaipur  
 
6th IEM DAY due to covid -19

 MERD India along with IEM Charitable Support Trust Organized Inborn Errors of metabolism Day by webinar, Dr Anil Jalan, Dr Anupam Sibal , Dr Rohit Cariappa, Dr Chaitanya Datar , Dr Priyanshu Mathur, Mrs Geetanjali Kunte Dietitian was the key Speakers ,over 100 people well attend the webinar  

 

 

 

 

 
 
  Some facts about IEMS and Genetic Disorders in our country
 
1= 1 in every 500 to1,000 newborns was observed By Inborn errors of Metabolism 
 
2=India accounted for a staggering 29 per cent of the global deaths of newborns on their very first day of birth and nearly 40 per cent of neo-natal deaths happening on the first day of birth in India.
 
3=Experts point out that a lot of work has to be done towards improving newborn health in India as nearly 5-15 per cent 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.
 
4=Our annual birth rateis 21.76/1000 population. Out of the approximately 25 million new births in India, there are an estimated 1.6 Million babies born with birth defects including about 620,000 with genetic disorders.With no mandatory 
newborn screening at national/governmen tlevels, the country wide burden of genetic disorder sespecially the congenital conditions is huge and still unknown..
 
5=The newborn health challenge faced by India is bigger than that experienced by any other country. As India makes progress in addressing childhood illnesses, reducing newborn deaths remains a critical challenge, making up a growing 
percentage of child deaths. Today, India accounts for the greatest burden of newborn deaths in the world. An estimated 876,000 newborns die each year in India alone (2011 estimates)  accounting for an estimated 30% of the total global 
burden of neonatal deaths and and a staggering 53% of under-5 deaths in India
 
6=Out of every 100 babies born in this country annually, 6 to 7 have a birth defect. In Indian context, this would translate to 1.7 million birth defects annually and would account for 9.6 per cent 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 effects annually. Birth defects account for 9.6% of all new-born deaths and 4% of under five mortality. Development delays affect at least 10% children. 
 
7=India is a single country of multiple cultures and genetic traits. The research and data from one state does not necessarily apply to another region. The incidence of CAH is thought to be higher in Southern India; where as incidence of 
G6PD is thought to be highest in Punjab and Gujarat. Thalassemia has its highest incidence in Guajarati,. Disorders mimicking methyl malonic acidemia (MMA) is thought to be higher in vegetarians in south India than in north India. These 
geographical variations and their understandings are very important in planning the health programmes of a country.
 
Note-The facts provided in this news has been sourced from various websites and articles. By no means we claim to be exhaustive or up-to-date.
Rare Disease Day

World Down Syndrome Day

DNA DAY

Awareness Week

IEM DAY

Valid XHTML 1.0 Transitional Valid CSS!