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Appeal
   A Parents Appeal

In India, the health care priorities are still limited to reducing the Infant Mortality Rate and meeting basic infrastructure requirements.The Government of India is yet to have a mandatory screening program for newborn babies.We believe that every Newborn has a right to lead a healthy and normal life and the first step towards that is to get a Newborn Screening (NBS) Test.We Feel as the Newborn cannot speak for itself it is the responsibility of healthcare providers, the parents, the society and the government to make NBS available for every Newborn. We are sure that medical fraternity must be aware that besides communicable diseases there are almost less than equal number of newborns who are suffering because of-non-communicable diseases like treatable IEMs.

Treatable IEMs are those set of disorders which if detected & properly treated before the onset of symptoms can help a Newborn lead a very normal and healthy life. The only way to detect them is by routinely performing screening tests on 
all newborns (normal or otherwise).We think Apart from infectious diseases, IEMs could be the largest group of disorders, completely hidden from public and government eye.If we look around, may be many family could have lost or affected children in inexplicable circumstances, probably due to IEMs.
 
 
Diagnosis
 In center where-NBS is available and when it come positive , then confirmation of the diagnosis is required . here very less centers there with such facility .so experts with their available connections send the samples aboard , by the time the 
results are available , mostly many children would died , so we should be set up reference labs so that confirmation of diagnosis will be at the earliest and many children can be saved.
 
Diet/ Medicine
 
There are several babies in India that are born with Inborn Errors of Metabolism.  
One of the crucial treatments for such babies is “Specialized Diets” in some IEMs Currently these 
Diets cannot be imported in India by an affected parent ,because of Government’s restriction  due to which a lot of babies are permanently impaired or die. Merd India is also campaign  with Food Safety Department, Govt. of India. 
 
 To List a few diseases for which Diets play a critical role are:
 
 Tyrosinaemia - Phenylketonuria - Maple Syrup Urine Disease - Methylmalonic & Propionic Acidemia - Urea Cycle Disorders- Isovaleric Acidemia – Glutaric Acidemia- Fatty acid oxidation disorders-   Ketogenic diet 
 
FSSAI to allow import of food for special medical purposes

http://www.fssai.gov.in/Portals/0/pdf/Direction_Import_Food_IEC_Disorder_24_11_2016.pdf
Fssai Diet for Life 
 
 Source-http://diet4life.fssai.gov.in/
 
Importing formulated foods now easy
 
Patients suffering from rare metabolic disorders will now have to submit only a signed declaration
 
source-http://www.dnaindia.com/india/report-importing-formulated-foods-now-easy-2458666
 
 
Medicine : Not available in ordinarily medical stores easily  
 
1.Thiamine : Some time difficult
2.Sodium benzoate : many time Difficult 
3.Neonatal catheter for hemodialysis : Only at specialised stores
4.Glycine :only ( At special chemical stores )
5.Nitisinone : Difficult and costly (NOT Available )
6.Dichioroacetate : Difficult and costly (Not Available )
 
 MERD India urges various agencies involved in the improvement of Neonatal care to implement the following at the earliest
 
1. Mandate some form of Newborn Screening at a National level (preferably on the the guidelines issued by the National Neonatal Forum of India)
 
2. Create adequate infrastructure for mass screening programs
 
3.. Create a National Newborn Screening Registry
 
Update
 
ICMR launches Indian Rare Disease Registry to address unmet needs of patients with rare diseases
 
 http://irdr.icmr.org.in/irdr/
 
4. Easy diet available for babys who suffered by inborn errors of metabolism
 

Update

http://diet4life.fssai.gov.in/

 
 
5. Create adequate infrastructure to develop and make local diets. that would ultimate solution of the problem
 
 
  Please sincerely look into our Appeal and help to make our country a better and safer place for Newborns.

 

 

 

 

 

 

 

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