Newsletter

Recent Activates
 
Recent Activates from MERDIndia in October 2020

1)MERDIndia gave informative support to more than 25 people regarding IEM and NBS.

2)Only Webinars activities were Attended in October due to COVID-19

Webinars

15th Oct

Participated IndoUSrare Webinar - Rare Disease Patients Engagement with FDA In this introductory
webinar, guest speaker was James Valentine, JD, MHS, Attorney at Hyman Phelps McNamara

25 October
Participated Indian Rett syndrome foundation webinar focused om musical Therapy
26 October
Participated IAP webinar UNDERSTANDING THE IEM ALGORITHM Speaker was Dr Anil Jalan

Happy news

Long-Awaited Drug for Alkaptonuria (AKU), the First Inborn Error, On the Way to Approval in Europe

https://dnascience.plos.org/2020/10/01/long-awaited-drug-for-alkaptonuria-aku-the-first-inborn-error-
on-the-way-to-approval-in-europe/




Hearing screening should be mandatory in our country

http://ibgnews.com/2020/09/27/more-than-one-lakh-deaf-children-born-every-year-in-india/


Chennai Boy Undergoes First of Its Kind Living Donor Liver Transplant in India for Rare Metabolic Disease

We sincerely appeal to you FOR COVID-19 updates, if required, can be retrieved through
Government of India official link-or the AarogyaSetu App.
Useful informative link:https://www.covid19india.org/
 
 


 

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.
Satisfactory News
To ensure the consistent supply of Food for Special Medical Purposes i.e., food for Inborn Errors of Metabolism (IEM) conditions and hypoallergenic conditions, FSSAI has extended the permission for their import for a further period of six months till Nov 1, 2020 through Delhi and Mumbai ports.

http://www.fnbnews.com/Top-News/fssai-ensures-uninterrupted-food-business-operations-during-covid19-55730
 

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

 

 
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