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Hosted by Unknown Host · 🇺🇸 US · EN · 103 episodes
Established thought leaders with verified media credentials.
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 famil
Unknown Host hosts Raising Rare, a kids show with 103 episodes published.
“I have no idea what I'm doing. I've never done this before. I am a pediatrician, but I have not been trained on this . I couldn't be more qualified to be Soraya's mother, and yet I am clueless.” Tasha Faruqui In this co
Our conversation explores the end of the school year, summer planning, managing health challenges, and finding peace amidst life's unpredictability. Brittany and Kevin share insights on delegation, self-care, and maintai
“I didn’t realize how alone I was.” For Prader-Willi Syndrome (PWS) awareness month, we are sharing a discussion with Jessica Patay, founder of We Are Braver Together. PWS requires 24/7 vigilance over a child whose appet
100 EPISODES!!! It is hard to believe that over 6 years ago, we started Raising Rare as an experiment. How would people react to following the life of a young family affected by an ultra-rare disease? The response has be
Almost 7 years ago, Sanath Kumar Ramesh found out his son had an ultra-rare mutation. This began a journey that would force him to grow into a man he never imagined. Part of his journey was this podcast, Raising Rare. No
How do you tell whether a zebra is male or female? The male doesn’t’ talk about their #raredisease. This can be hard on them. There have been very few places for them to gather to take care of their #mentalhealth. David
“This journey has changed our lives, has reshaped my identity. Plans change, dreams shift. I've had to learn to become more than just a mom.” Mariah only started this journey earlier this year. She has climbed the initia
Five years ago, we first spoke with Nikki McIntosh. In this episode, Nikki returns to share her journey as a mother of a child with spinal muscular atrophy (SMA) and the profound impact of clinical trials on her son’s li
The stories of rare kids powerfully shape the stories of the parents who are raising them. In this episode, Claudia Parker discusses how her daughter, who has FOXP1 syndrome, has brought so many benefits into her family’
“Raghav’s expression for discomfort is laughter, counterintuitively. We call it his cranky laughter.” Sanath Ramesh Imagine not being able to tell the people around that you are in pain. Or more accurately, imagine that
This season, you probably have heard Everleigh’s voice a little more often. It was this story that gave us the idea. In this short episode, we hear about one of the unexpected struggles that Brittany had to deal with ear
“I am afraid there is something wrong with her brain” A mother’s intuition is often the first telltale sign of a rare disease. With the deep bonds that are built during pregnancy, there seems to be a connection between m
“I am so thankful that we had that one Christmas without knowing…” Jill Wood. When Jill’s son Jonah was born, there was no sign that he was anything but adorable. However, at his 1-year visit, his pediatrician noted Jona
Raising a child with a rare and complex disease is a full-time job… or more. Constant advocacy. Almost every interaction regarding the child requires additional effort to bring people or the system up to speed. And this
Flexibility is critical when talking about raising a child with a rare disease. It has been a long time friends. The Raising Rare Team has been dealing with a number of challenges since Season 5 ended. As a result, we ha
Season 5 has been fantastic. We feel so thankful to our guests for sharing their stories. Which emotion-character from “Inside Out” are you? Sanath and Brittany reveal the characters they relate to the most. Rare parents
As a new parent, you feel like “oh, my gosh, I must be going crazy” or… …maybe the doctors don’t even understand what is going on. New parents do not know what to expect. There is a lot of self-doubt and questioning even
We often hear the stories of patients and caregivers. Rare Patient Voice is well known for connecting family's stories with the researchers who need to hear them. The founder, Wes Michael, sat down with us to share the r
In Part 1, we heard about the bold and courageous approach that Ryan Benton's family took to treat his Duchenne Muscular Dystrophy. After seeing the success of the stem cell therapy, Blake and Ryan Benton felt very deepl
Blake Benton’s earliest memories were his brother declining due to Duchenne Muscular Dystrophy. About 10 years later, his parents and brother made a bold move. They went to Costa Rica to get an experimental stem cell the
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Raising Rare is hosted by Unknown Host. The show is categorised under kids (family) and has published 103 episodes.
Raising Rare has published 103 episodes.
Raising Rare regularly covers kids, family, parenting. It sits in the kids category, with a family focus.
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Raising Rare hasn't explicitly signalled guest openness in recent episodes. That doesn't rule out pitching. your hook just needs to be especially compelling and relevant to their recent content.
Episodes of Raising Rare average 34 minutes. a focused format where a clear narrative arc and tight preparation matter most.
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