A Phase 3 extension trial has confirmed Alprolix’s long-term ability to prevent bleeding episodes in hemophilia B patients, and its safety. Those in the B-YOND extension trial did not develop an immune response against Alprolix. Adults and adolescents were treated for three years, and children under 12 for 18 months. “These results…
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InSourceRx is partnering with the National Hemophilia Foundation (NHF) to help those with inheritable blood disorders, such as hemophilia, better afford medications. InSourceRx is a pharmacy discount card company that teams up with nonprofit and patient advocacy organizations to provide discounts for essential medicines and supplies. Blood…
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Remembering the Diagnosis
I received an email from a friend I hadn’t heard from in some time. She told me that her nephew and his wife just had a baby and he has been diagnosed with hemophilia. She had ordered my book to send to her niece and was hoping I would…
Last night, I had very little left in the tank. The past few weeks have brought unique challenges and responsibilities that left me weary. As I started thinking about my column for this week, I realized how much time I’ve spent writing about when my children were small. But what…
I met Jennifer Hastie last year at the Hemophilia Federation of America’s Mild Matters Summit in Tulsa, Oklahoma. Along with two of her three daughters, Jennifer has von Willebrand disease (VWD) type 2B, a rare variant. We share more than just a name: Jennifer is also 58…
My husband, Jared, has fond memories of his school days when he was younger. He went to an all-boys combined elementary school and high school, where roughhousing and horsing around with friends were common. He and his classmates sometimes were crude and rowdy, he says, but they were all very…
It started the fall of my daughter’s sixth-grade year in school. While I had listened to DJ Elliot Segal of the radio talk show “Elliot in the Morning” for nearly 20 years by then, I’d done so mostly solo. My husband found no value in the show, and I…
In the Philippines, where we live, Christmas isn’t confined to a single day. It unfolds as a season that spans about a third of the year, kicking off in the first of the “-ber” months. As a child, I cherished the joy of strolling through streets adorned with flickering…
The smell of rubber. The clanging of metal plates against one another. The sight of sweaty bodies heaving, struggling. Towels slung over shoulders. Muscles popping out of the chiseled physiques of a couple who walk through the place like a king and queen (fittingly, as they are its owners). Jared…
My husband, Jared, and I run an online jewelry store. Over the years, the fact that our store is run by persons with disabilities (PWDs) has become one of its main selling points. We’ve had fellow PWDs and advocacy supporters speak to us and purchase items. They mentioned that…