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

As a patient, I used to think success meant walking out of the hospital. Now I know success is what happens in the months and years after. This piece shares the “fine print” many of us only learn once we’re already living it. At HeartBridge Collective , we believe lived experience belongs at the center of the clinical conversation—not as an afterthought. Patients are not just study subjects. We are partners in shaping better care. Without a patient voice, the full picture is

Some seasons in caregiving feel like you’re holding your breath… and then finally letting out a slow exhale when you hear, “He’s doing okay.” That’s where we are right now. Louis had another round of scans this fall. The good news? Most of the swollen lymph nodes in his body have stayed the same or gotten smaller. The only change was under his left arm, where the nodes got bigger — so his doctor did a biopsy to check everything. The biopsy confirmed his CLL is still present,

Why awareness, earlier answers, and patient voices matter in carcinoid heart disease and valve care ✨ What I Learned Today I love sharing the things I learn along the way, especially when it’s something I wish patients were told sooner. Today’s lesson? How some rare cancers can damage the heart long before anyone realizes what’s happening and why this matters more than people think! Some rare cancers, like carcinoid tumors, can release too much serotonin into the bloodstream.

Your story, your chemistry, your care — no one else’s body works like yours. Have you ever stopped and thought about how no two people are exactly the same?Not even identical twins. We might share the same diagnosis or take the same pill, but inside, our bodies work in their own way.Our genes, hormones, gut bacteria, past illnesses, and even how we handle stress make us unique.That’s what makes life interesting and what also makes medicine complicated. 🧬 Medicine Talks in Av

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

When I first started speaking up about my story, I had no idea how much it would teach me.I never imagined my journey could be used to highlight gaps in our healthcare system—or to help push for solutions that give patients real hope. 🫸 The Waiting Game The truth is, even after the FDA approves a breakthrough treatment , patients often still have to wait years for Medicare  to decide if it will be covered. That waiting period is sometimes called the “valley of death.” I know

The invitation that changed everything. Because sometimes, the seat at the table is the miracle. I’m so excited! We are headed to Dublin, Ireland  for the #GHHUnite Summit 🌍  The Global Heart Hub brings together people from all over the world who care about heart health — patients, caregivers, doctors, and researchers. We come together to learn, share ideas, and make sure patients’ voices are heard. 💫 Why This Means So Much It’s hard to describe what this invitation means t

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Being quiet won’t protect you—but being informed just might.  If you're anything like me, you didn’t choose this health journey—but here...

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