25 episodes

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.

A Rare Reality Jordan's Guardian Angels

    • Society & Culture
    • 5.0 • 6 Ratings

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.

    A Rare Reality, Season Two, Episode 20: Owning My Story

    A Rare Reality, Season Two, Episode 20: Owning My Story

    Have you ever wanted to tell your story or your child’s story and didn’t know where to start? This week we sit down with Abbey Hauser with Owning My Story.



    She’s a young adult living with rare disease and an incredible voice in the rare disease community. Hear everything that she has been through with Classical Ehler’s-Danlos Syndrome, how she decided to own her story and her truly inspirational triumphs.



    Abbey's Instagram: @_owningmystory_

    • 34 min
    A Rare Reality, Season Two, Episode 19: Cut Us Some Slack

    A Rare Reality, Season Two, Episode 19: Cut Us Some Slack

    Ok, that’s not what it means! So, what is Slack? And why are we on it? We take a closer look at the new platform JGA is using. How does it work? Why do we need it? How will it help? And where do you start? We answer all of your burning questions! AND have you visited our revamped resource center? It’s looking good! We take a closer look at what’s in there and how it can help you. Tune in!

    • 13 min
    A Rare Reality, Season Two, Episode 18: New Family Guide (Encore Edition)

    A Rare Reality, Season Two, Episode 18: New Family Guide (Encore Edition)

    So you've been diagnosed with Jordan's Syndrome. Now what? This is a step by step guide to getting the most out of Jordan's Guardian Angels.



    This podcast is specifically geared toward our newly diagnosed families. We are here for you.



    Additional Resources: 



    Jordan's Guardian Angels Resource Center



    Jordan's Syndrome Family Database



    Joining the Research through Simons Search Light

    • 26 min
    A Rare Reality, Season Two, Episode 17: 2022 Family Conference Update

    A Rare Reality, Season Two, Episode 17: 2022 Family Conference Update

    We are taking a look back at our family conference this week! What worked, what needed work, special thank you’s and much more. Take a listen and see if you agree!

    • 11 min
    A Rare Reality, Season Two, Episode 16: The Story of Frank

    A Rare Reality, Season Two, Episode 16: The Story of Frank

    Nancy Chirlo sits down with us to tell the story of her beloved brother’s life. Frank remains the oldest known person with Jordan’s Syndrome and after his passing donated his brain to science to continue the research efforts. Nancy has a heart of gold, the most loving sister and this is a beautiful, difficult, wonderful conversation that many of you will truly benefit from hearing.

    • 47 min
    A Rare Reality, Season Two, Episode 15: Canine Companions

    A Rare Reality, Season Two, Episode 15: Canine Companions

    Does your family need a calming presence with 4 legs and a wagging tail? Now is your chance to hear all about Canine Companions: from what it takes to bring a dog home, to parent involvement, cost, and why having a Canine Companion could be the best thing for your family. Visit www.canine.org to learn more!

    • 12 min

Customer Reviews

5.0 out of 5
6 Ratings

6 Ratings