13 years of relevant experience in handling parent support group from Jaipur, Rajasthan, active participation in various events organized to create awareness for Inborn Errors of Metabolism and to campaign for newborn screening in India has helped us mentor 12000+ people through MERD India by providing help and necessary information and support and helped diagnose and save over 100 children.
After MERDIndia campaign
FSSAI has initiated Diet4Life to help people understand about metabolic disorders.. It will provide a comprehensive platform to parents, Health care professionals and parent support groups to adopt the right approach towards Inborn Errors of metabolism (IEM) management.
In India many babies suffer from life threatening conditions of IEM, and treatment of these metabolic disorders require early nutritional and dietary intervention. In view of the seriousness of the issue, FSSAI initiated a unique platform for parents to find timely medical support and treatment. FSSAI has entered into a partnership with professional organizations, healthcare
professionals and corporates to address the challenge that plagues a small section of our society
https://eatrightindia.gov.in/diet4life/
https://fssai.gov.in/cms/diet4life.php
https://fssai.gov.in/upload/knowledge_hub/1385075b34be3d5828aDiet4Life.pdf
Rare Disease Policy
views were given during several meetings and also committee responsible for Rare diseases policy , Govt of India.
https://main.mohfw.gov.in/sites/default/files/Final%20NPRD%2C%202021.pdf
Newborn Screening
Several Child care Centre mandatory New-born Screening as a program after MerdIndia Campaign
Centre Of Excelence Treating Raredisease
Excellent News
The Central Government has given full exemption from basic customs duty on all drugs and Food for Special
Medical Purposes imported for personal use for treatment of all Rare Diseases listed under the National
Policy for Rare Diseases 2021 through a general exemption notification.
https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1912095
Other great news
https://timesofindia.indiatimes.com/city/delhi/delhi-hc-exempts-customs-levies-on-rare-disease-drugs/articleshow/108216241.cms
GST Council recommends IGST exemption for Dinutuximab (Quarziba), medicines and Food for Special Medical
Purposes (FSMP) when imported for personal use subject to existing conditions. Recommends extension of
exemption to FSMP imported by Centres of Excellence for Rare Diseases or any institution or person on
recommendation of such listed Centres of Excellence
https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1938812
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