Raising Rare
Raising Rare
0+
10+ APD
Global Rank
TOP 1%
Creator:
Raising Rare
- Medicine
- Parenting
- Kids & Family
- Health & Fitness
- Life Sciences
- Medicinee
- Science
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Podcast data
Created By Raising RarePodcast Status activeStarted 26/02/2020Latest Episode 26/02/2020Release Period EpisodicEpisodes 60Partner Reviews 0Language EnglishFrequency 501Average Length 28 minutes and 25 secondsCountry United StatesGlobal Rank TOP 1%Description
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown. They were alone. They were scared. And then they went into action. And now they want to share their story. Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps. We don’t know where this story will go. We do know we want you to join us for the journey. -
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