At HeartBridge Collective (HBC) , we support patients and caregivers alike — because rare disease is never a solo journey. It affects the whole household, the whole family, and often the same two people day after day. When a rare disease is discussed, the focus is usually on the patient. But standing right beside them is a caregiver whose physical, emotional, and mental health are also on the line. Research now confirms what families have been saying for years: the emotiona

What the New Clinical Research Guidelines Mean for You Clinical research is changing. Here is what it actually feels like for you. When you’re a patient or a caregiver in a clinical trial, you don’t care about "regulatory updates" or "global compliance." You care about whether the study fits into your life. You care about whether you feel heard, safe, and respected. 👂❤️‍🩹 There is a new global guideline called ICH E6(R3) that is currently reshaping the future of research.

As this year comes to a close, I’ve been reflecting on the last 12 months of my personal life. A lot of it was heavy. A lot of it required honesty — even when I didn’t feel ready for it. If I’ve learned anything this year, it’s this: life doesn’t wait for us to feel ready. A Year That Didn’t Pause ⏳ This year, my husband Louis faced a cancer recurrence while I was dealing with my own cancer scare. There was no pause button.No moment where life slowed down so we could catch o

Because lived experience explains the “why” behind every statistic.   ❤️‍🩹 I can’t shake this one line that keeps echoing in my head: “Data comes alive through a real human story.”  ✨ It sounds like something you’d jot down during a meeting about “impact,” right?But honestly… that line sums up my whole life.A little humbling. A little exhausting. And every bit is true. The Two Worlds We All Move Through 🌍 Most of us bounce between two very different worlds. 1. The World of

How hospice taught me to leave a legacy and live one too. When I was in hospice, everything changed. Not just physically, but...