25 episodes
A Rare Reality Jordan's Guardian Angels
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- Society & Culture
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5.0 • 6 Ratings
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We are living ‘A Rare Reality’ and we want to tell you all about it! Join Jordan’s Guardian Angels as we cover dozens of topics in the rare disease space and give you a closer look at our groundbreaking research into Jordan’s Syndrome that could one day change the world. We want to uplift, advocate, motivate and inform.
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A Rare Reality, Season 3, Episode 18: Research Update with Dr. Wendy Chung
In this episode of "A Rare Reality," hear the latest incredible developments in our research efforts, with JGA lead medical investigator Dr. Wendy Chung, and our Executive Director Carole Bakhos.
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A Rare Reality, Season 3, Episode 17 – Stories of Hope: Matt Schwartz
August is all about stories of hope! For this episode we sit down with Matt Schwartz, one of our very own, a Dad, who has been newly diagnosed with Jordan’s Syndrome.
We hear from him about his recent diagnosis, how he feels about our community and the research, living with Jordan’s Syndrome, and his message of hope for all of us. Truly a story you don’t want to miss. -
A Rare Reality, Season 3, Episode 16: Stories of Hope
In this special edition of A Rare Reality, we're taking a look back at some of our favorite stories of hope!
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A Rare Reality, Season 3, Episode 15: Simple Luxuries, Part Two
We loved it so much we are going to do it again! It’s Simple Luxuries Part 2, this time with some of our JGA Moms!
What the one simple thing that brings you joy? It can be anything at all, and you might be surprised at what you hear! :) Tune in, and then we want to know what your simple luxury is! Take a listen and then chime in on Facebook! -
A Rare Reality, Season 3, Episode 14: Simple Luxuries
This week, we are talking all about the simple luxuries in life. Whether it’s a cold soda with ice, a quiet walk or a good book, what are the simple things that bring you joy? Take a listen and then chime in on social media to share yours with us!
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A Rare Reality, Season 3, Episode 13: Let's Get Real
Just three Moms talking about hard things. Different perspectives, different scenarios but all just trying to survive and thrive and do what’s best for our kids and our families. Can you relate?