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, Episode Four: Journey to a Cure – How Did We Get Here?
Join your JGA Team Memebers as we cover what it takes to build a foundation and sustain it from the ground up. From forming your teams, to starting a registry and natural history study, to social media, engagement, fundraising and more, we cover what it's like to start from scratch. If you're in the rare disease world and wondering how to start, what to do next and what to know, or if you're feeling overwhelmed you're not alone…or if you just want to hear our story, this podcast is for you!
A Rare Reality, Episode Three: A Rare Reflection, Michelle Fruhschien
We've all had those moments with our children that are burned into our memories forever. On this episode we sit down with MamaBearForRare to talk about her daughter, life with rare disease, the memory she won't ever forget and her message for families dealing with rare disease.
A Rare Reality, Episode Two: You Are Not Alone – Acceptance
When you're a rare family it's easy to feel like you're on an island, but far from it…. You Are Not Alone. Join us as we talk about acceptance, and how being different is ok – a special series you won't want to miss.
A Rare Reality, Episode One, Part One: Living with Jordan's Syndrome
Dr. Wendy Chung, MD, the lead investigator for Jordan's Guardian Angels and one of the world's most respected geneticists, explains what Jordan's Syndrome is and how finding a cure may help solve some of our greatest medical mysteries.
A Rare Reality, Episode One, Part Two: Living with Jordan's Syndrome
In part two of our pilot episode, hear from JGA's families about what it's like to live with Jordan's Syndrome, from the challenges to the incredible bravery and determination our children show every single day, to the hope we all share for a treatment or cure.