An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

I am sitting in a favorite restaurant with the three great loves of my life: my wife and two sons. It is Valentine’s Day, and the place is packed and loud. But the noise fades into the background as I find myself captivated by the conversation at our table. We…

Change is inevitable — like it or not, it’s a part of life. The seasons change and bring a crispness to the air or warmth after the bitter winter cold. Jobs change and we are given new responsibilities and challenges. Change happens throughout our lives, and we must move forward…

Takeda presented new real-world data highlighting the underdiagnosis of hemophilia A and B, supporting the effectiveness and safety of its hemophilia therapies — Advate, Adynovate, and Feiba — and discussing potential benefits of personalized therapies. The company presented these latest data at the 13th Annual Congress…

I attended my first women-only hemophilia retreat in the fall of 2016. To say the weekend was an eye-opener would be a gross understatement. It changed my life. First of all, I learned that I was not alone in my struggles to understand lifelong bleeding…

Lately, I’ve spent a lot of time driving on Interstate 95. I barely like driving across town, let alone spending eight or more hours a week on one of the most congested stretches of highway in America. But I’ve joined the legion of long-distance commuters on the East Coast. Several…

A lack of control is one of the most frustrating things about staying in the hospital. Doctors, nurses, and everyone else enters the room without permission. Nothing runs on my schedule. I need to find a way to reclaim at least a small part of my life. I do not…

It was a beautiful Sunday afternoon and I encouraged my son Caeleb to take our dog, Betty, for a walk. He gathered the necessities of a 14-year-old — headphones and music — and put Betty on her leash and off they went. Encouraging my son to be active is difficult.

Carrier moms — those whose sons or daughters have hemophilia — inspire me. I see you struggle, sometimes daily, with the realities of parenting a child who has a chronic condition. Your tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and…

Memories flooded my mind as I was going about my usual work today. I suddenly thought about my life before I met my husband, Jared, before my pregnancy, and before our daughter, Cittie, was born. I thought about my depression. And then I thought about our future as…