Mr Vikas Bhatia, the founder of MERD India Foundation, is also a parent who lost his children to a rare disease that went undiagnosed until the death of his third child. In his futile attempts to save his three children, he educated himself on everything he could lay his hands on to, from the types of rare disorders to how it occurs and how such children could probably be saved. In this process, he acquainted himself with Newborn screening and its necessity to the nation. He shares with us his life experience of how he went through the trauma of losing all his three children without being able to do much for various reasons.
When spoken about his motivation in braving to start a foundation to help such parents, he only had to say that he wanted to help people and save lives. In his experience of understanding rare disorders, he had learnt that if not all, some of the rare disorders were indeed treatable and hence wanted to create awareness and help families that have children with rare disorders. In the following section of his interview with us, he sheds light on why parents, in general, are hesitant to open themselves to other people.
Starting a foundation to help parents with kids of rare disorders was not more so a challenge for Mr Bhatia but rather, the inability of his family and friends to comprehend his drive to help people was. But over time, he recalls the transformation of opinions from family and friends as his foundation rose to fame over time helping many families.
Throughout his journey as a facilitator for helpless families, he just has this message to all the parents of children with rare disorders.
“They are a boon. Do not see them as a burden. Nurture them with the best you can.”
Mr Vikas Bhatia
Mr Bhatia works with one vision while he is at it in constantly supporting affected families.
“One Rare Disease Hospital in every State and Union Territory with collaborative support from the government and the medical fraternity“
– Mr Vikas Bhatia’s vision for the nation
I am the Founder and Managing Editor of SciRio, a digital ecosystem for science communicators who want to communicate science to people who are non-experts in any fields of science. After stints as a Research Associate at the Indian Institute of Science and Centre for Human Genetics working on Cancer Research and Developmental Biology, I shifted gears to communicating science and become an entrepreneur.
I established SciRio to support science communicators in networking better, finding appropriate training and resources, and ultimately provide unexplored opportunities to science communicators.
- Suchitha Champakhttps://www.scirio.in/author/suchithachampak/
- Suchitha Champakhttps://www.scirio.in/author/suchithachampak/
- Suchitha Champakhttps://www.scirio.in/author/suchithachampak/
- Suchitha Champakhttps://www.scirio.in/author/suchithachampak/
Commendable work by Mr Vikas Bhatia for coming out in the open and starting an foundation under the name “MERD INDIA FOUNDATION” for creating an awareness about “Inborn Errors of Metabolism and Rare Genetic Disorders” which the major of Indian population hasn’t heard of and providing informative support and campaigning for newborn screening in the country. Good work by SciRio for bringing out such unnoticed but crucial things in this informative platform.
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