It’s a recap of a HUGE week in Washington, DC…Rare Disease Week! Our own Lexi Levine attended for JGA and gives us a full recap, what it is, what it does, new news on BIG headlines and how you can help too!

From being a Mom to a teenager living with Jordan’s Syndrome, to being an Ambassador, to finding hope in the little things and why it’s so important to get involved, this conversation covered it all. Don’t miss our emotional chat that’s sure to leave you feeling inspired!

Welcome to 2025 and Season 5 of A Rare Reality! We kick off the year with a look ahead at all of the things we are so looking forward to….from Clinical Trials, to fundraising, to ways to connect, this podcast and more, we cover it all! Join us as we kick off a great year […]

We are SO grateful! Join us as your JGA Team gathers together to reflect on the year and all that we are grateful for. It’s our final podcast of the year and our FAVORITE podcast of the year!!

Attention NEW Families, this one is for you! (And everyone else too!) We have launched our NEW new families packet, a one stop shop for our new families as you begin your journey with JGA. Our existing families also will benefit from this as it’s home to all of the links, info and housekeeping details […]

Advocacy advocacy advocacy! Take a listen as we debut our new initiative aimed at finding answers faster. How do we get to a diagnosis more quickly? How can you find answers you are looking for? How can YOU help? Educating families to know what to ask for sooner. Take a listen today and find out […]

We heard what they were doing and the success they were having with one of our own JGA kids and we had to tell you all about it! Meet Rise Pediatric Intensive Therapy! So what is intensive therapy? Would it benefit your child? We talk all about intensive therapy… how it works, what it does […]

Honesty, vulnerability, hope, love…you’ll get it all in this podcast with the wonderful Lucy Cooper! She poured her heart out and gave us one of the best moments at our Family Conference and now she’s back to tell us even more. She has a heart of gold and her willingness to be so very open […]

Listen as JGA parents answer your questions, give advice and provide insight regarding having a child with Jordan’s Syndrome. A must listen!

In a milestone moment in our journey, listen as Dr. Wendy Chung announces human clinical trials at the JGA Family Conference in Boston, in July 2024.