Raising children is like building a house. For those of us who manage chronic illness and other disorders, our floor plans may look a little different, but at the end of the day, we all want our loved ones to be strong and sturdy, and ready to face life’s…

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…

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…

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…

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…

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…