Accessing quality healthcare can be a struggle. Women with hemophilia have added challenges that range from not understanding their own bodies (after years of ignoring symptoms) to struggling to find knowledgeable healthcare providers. Growing up with an undiagnosed bleeding disorder meant years of dismissed symptoms. I was in…

Recently, I’ve taken to the ukulele. I love its diminutive size, how its four strings (versus six on a guitar) are perfect for my tiny hands, and the happy sound it produces. (Our neighborhood ukulele store is aptly named Happy Music.) In the past month, I’ve purchased a couple of…

Science projects at home are often cause for consternation. We’ve all been there: Where do we find the supplies, where do we set up, and what sort of mess will this make? These are the questions of the familiar parental refrain. But every now and again, one comes along that…

Looking back at my younger self, I don’t think I fully appreciated the help I received from others around me during my school experience. Being one of the few people in school with a rare medical disorder was an interesting experience. It definitely had its perks. For example, school staff…

This week is National Eating Disorders Awareness Week. Eating disorders are tough to address, yet critical, as many suffer in silence. I was one of them. I struggled with an eating disorder a few times in college. But I would vehemently deny it if…

The Institute for Gene Therapies (IGT) has launched, with the aim of maximizing the potential of gene therapies in genetic disorders such as hemophilia. Comprised of industry leaders, scientists, and patient advocates, the IGT’s overarching goal is to set the foundation for a modernized regulatory and reimbursement…

With Valentine’s Day over, it’s amazing to look back at the “Love Month” celebrations my husband, Jared, and I have had since we first started dating. In our six years together, we’ve had our share of Valentine’s Day celebrations. Some stood out more than others. One example is the time…

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…