Events
September is Newborn Screening (NBS) Awareness Month   

September is Newborn Screening Awareness Month! Every September, we are trying hard to create  and  raise awareness of newborn screening among  parents, healthcare professionals, 

Visible Birth Defect
Functional Birth Defects
Metabolic Defect 

 https://shalabham.kerala.gov.in/

What is newborn screening?
When your baby is 1 to 2 days old, he has some special tests called newborn screening.   Newborn screening checks a baby for serious but rare and mostly treatable health conditions at birth. It includes blood, hearing and heart screening.
Your baby can be born with a health condition but may not show any signs of the problem at first. If a health condition is found early with newborn screening, it often can be treated. Early treatment is important, because it may help prevent more serious health problems for your baby.
https://www.marchofdimes.org/find-support/topics/parenthood/newborn-screening-tests-your-baby
 

 
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 2016  was celebrated  in India in many city like   Jaipur, Delhi, Bangalore, calicut. 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 ,12 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 80 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
 
YEAR 2022
 
 
27 February 2022
 
We observed rare diseases day at umeed special children school at jaipur with kind support from lion club jaipur Adarsh nagar, more than 40 people along children well attended the program, we provide many items to specially needy children, this was very best program for us. 
 
YEAR -2023
 
28th February New Delhi-
Participated in rare disease day celebration organized by Dte.GHS,MoHFW in collaboration with CHEB, AIIMS, MMAMC New Delhi
26th February ASANSOL
 
Organized Rare Disease Day awareness seminar along with IEM support Charitable Trust,Reborn, IAP Asansol at Odyssey Club Key Speakers Were Dr Anil Jalan, Deppanjna Datta, more than 50 people well attended the seminar.
 
Participated Race for rare diseases Awareness organized by ORDI, Reborn at Odyssey Club Grounds.
 
19th February Kochi-Participated in ORDI race for 7, awareness run for rare diseases Awareness in India, few hundred people well attended the run along with children and few patients. 
 
year -2024
 
3rd march
 
Jaipur-organized unique symbolic Rare Disease Awareness Posters gallery at Kalaneri Art Gallery Jawahar
Lal Nehru Marg,display 100 rare diseases Posters, over 115 people well visited the Awareness gallery,
wonderful support by Organization For rare disease and other many parents Advocacy Group from India .
 
28th February 
 
Jaipur - Observed rare diseases day at Nirmal Vivek Special children school with magic show, over 100 
Spacial children includes school Management was enjoyed the show ,8 members and 3 children also 
Participated. 
 
25th February 
 
Kozhikode- Participated race for rare diseases Awareness at kozhikode beach freedom square, organized by 
Organization For Rare Disease India, over 100 people well attended the run 🏃‍♂️. 
 
Rare Disease Day
DNA DAY

Awareness Week
IEM DAY
September is Newborn Screening (NBS) Awareness Month
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