It is hard for some of the people in my community to understand why my son Caeleb struggles when he walks. Many see him as a normal 14-year-old boy who towers over me and is as goofy as the next kid. But they didn’t see him when he needed…

Like other countries, the Philippines is in a state of panic due to the COVID-19 outbreak. Schools have canceled classes well into mid-April. The possibility of lockdowns in various cities and municipalities is quickly becoming a reality. In the metropolitan Manila area where I live, authorities are about to prohibit…

I do not have hemophilia. My sons are the ones who live with a chronic bleeding disorder, and at first, I struggled to find something we might have in common. My wife and I are musicians, and the running question during my wife’s pregnancies was, “What if they are…

My 14-year-old son Caeleb is having trouble walking. Some days are better than others, but the bad days are filled with crazy pain. His right knee and ankle have sustained tremendous damage over the years from the joint bleeds that are a complication of hemophilia. His chronic…

Struggles with “mood and emotions” and feelings of social isolation or inadequate social support are more pronounced in young children with hemophilia and their parents than in age-matched healthy peers,  a study from Japan reports. But such “anxieties,” which affect quality of life, were less a concern in survey…

Growing up is exciting. Most young adults spend their late teens and early 20s meeting new people and making new friends. As we grow older, we get jobs, move away from home, and date. Some choose to get married and have kids. Inevitably, we also outgrow some old friendships.

ClotChip, a portable device designed to quickly assess the ability of a person’s blood to clot, has been designated a breakthrough device by the U. S. Food and Drug Administration (FDA), its maker XaTek announced. This designation offers the company additional FDA guidance and the possibility of priority…

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

It seems as if there is a day for everything: there’s National Wear Red Day, Boss’s Day, Rare Disease Day, Love Your Pet Day, and even National Margarita Day. And months are also observed for causes such as Blood Donor Month, Breast Cancer Awareness Month, and National Yoga Month. From…

In support of Bleeding Disorders Awareness Month in March, the Plasma Protein Therapeutics Association (PPTA) is providing a global outlet for patients who wish to share their experiences, advocate for therapy access, and thank plasma donors. The campaign — called “How Is Your Day?” — seeks to heighten awareness of…