I’m thrilled to share this week’s podcast episode with you—it’s one that I believe will leave you feeling inspired and ready to take action. This time, I had the honor of moderating a conversation with some truly incredible advocates in the rare disease community. The dynamic on this panel was so powerful, with each guest bringing their unique perspective and experience to the table. It’s a conversation I’m excited for you to hear.

We were joined by leaders in the rare disease space who have stepped into advocacy roles out of necessity. They each have deeply personal stories of navigating the challenges of raising children with rare diseases, and how those experiences pushed them to take on leadership roles in their communities. What I found so compelling about this panel is that leadership wasn’t something any of them sought out. It was something that found them when they saw a gap in support and knew they had to step up.

The guests shared their journeys of building connections, forming collaborations, and how those early steps—like reaching out to other families who understood their struggle—have led to real, impactful change. Whether it’s collaborating with scientists to push for treatment advancements or creating patient advocacy groups to support families, these guests showed how leadership in rare disease advocacy often grows from the need to make things better, even when the path ahead isn’t clear.

We also dive into the importance of community and the strength that comes from connecting with others who understand the struggle. One of the most moving parts of the conversation was when one of the panelists spoke about how reaching out to another family online sparked a collaboration that changed both of their lives. It’s a powerful reminder that we don’t have to face these challenges alone—and that reaching out can lead to unexpected and meaningful connections.

Did you know that Global Genes hosts the Rare Advocacy Exchange? It’s an incredible platform designed to help rare disease advocates gain the knowledge and tools they need to make a lasting impact. If you’re passionate about rare disease advocacy, it’s a fantastic resource to get started.

You can listen to the full conversation right here!

I hope you find as much inspiration in this episode as I did. And as always, I’d love to hear your thoughts after you listen!

see you in the episode,
Kara