Newsletter

Recent Activates
 Recent Activates from MERDIndia in May 2021
 
1)MERDIndia gave informative support to more than 15 people .
 
2)Only Webinars  activities in May  due to coronavirus and lockdown
 
 
29th May 2021
 
Participated  ORDI - AOCN Webinar Series - Session 6 Linking Phenotypes to Diagnosis,
 
 
22 May 2021
 
Participated in webinar on  Thalessemia ,organized by Indian Dietetic Association Jaipur Chapter
Speaker were Dr Rajiv Kumar Bansal & Surbhi Pareek  (Dietician and Nutritionist)
 
15th May 2021
 
Participated ORDI - AOCN Webinar Mitochondrial Diseases Session 4
8th May 2021
 
Participated ORDI-AOCN Webinar on Metabolic Epileptic Encephalopathies.
 
Useful Information 
 
Nulibry (fosdenopterin Origin Biosciences) for injection is now available to reduce the risk of 
mortality in patients with molybdenum cofactor deficiency (MoCD) Type A.
 
MoCD Type A is a rare, inborn error of metabolism caused by mutations in the MOCS1 gene that results in 
toxic sulfite accumulation in the brain. The disorder typically appears shortly after birth and leads 
to intractable seizures, brain injury and death. Nulibry replaces missing cyclic pyranopterin 
monophosphate, which is needed to reduce levels of neurotoxic sulfites.
 
 
We salute the front-line workers in the COVID-19 pandemic who are doing a tremendous job,
We sincerely appeal to you
Please stay home and stay safe
 
COVID-19 updates, if required, can be retrieved through Government of India official link or the
AarogyaSetu App.
 

Happy News

Successful liver transplant for girl with rare disease
https://www.shine.cn/news/metro/2104097202/

Happy news from Mysuru


The AIISH has been conducting newborn screening in 19 hospitals in Mysuru and has additional 14 newborn
hearing screening centres spread across the country. More than 56,000 babies had been successfully
screened for hearing loss over the last one year.

https://www.thehindu.com/news/national/karnataka/aiish-screening-of-newborns-at-cheluvamba-
launched/article30975171.ece

  Life saving Diet 

 
Government Of India Notification  
 
https://www.fssai.gov.in/upload/advisories/2021/01/6006ccc91e249Direction_IEM_19_01_2021.pdf
 
 



 


              

Update
 Also, Check out 
 
Amidst corona, two-year-old Guj girl gets liver transplant
Hirva is the youngest recipient of such transplant in Gujarat so far.
Her mother, who furnished a part of her organ for her daughter, was discharged on Tuesday, while the daughter will get discharged 8-10 days later, doctors said.
We replaced the entire damaged liver of Hirva with 230 grams portion (20 per cent) of left lateral portion of her mother liver. Both the mother and daughter are absolutely fine. The mother was discharged today while the operated baby will still have to be hospitalized for another 8 to 10 days. Hirva will now lead a normal and healthy life just like any other kid, said surgeon Dr Anand Khakhar.
 

Please make  our country a better and safer place for Newborns.

 

 
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