I’ve been sick for most of this week with digestive issues. This is a chronic condition for me, but it always bothers me when it happens. I’m weak and unable to do much. I must gauge my energy levels and try to squeeze important tasks into the moments I…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. 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…

https://www.youtube.com/watch?v=rCZunn4ML5o If you’re living with a chronic illness, it’s easy to slip into a malaise and feel sorry for yourself. This isn’t a helpful state of mind and it potentially means you’re missing out on life. In this video from NewLifeOutlook, Anna Scanlon shares her five…

I’d been sick with acute respiratory troubles for almost a week. Not a minute had gone by without a sniffle or a sneeze. My sinuses had been painful and horribly congested, my throat inflamed, and my stomach upset due to the collection of phlegm in my digestive tract. (Don’t get…

Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. Disorder: The Rare Disease Film Festival strives to eventually host a film about every one of the nearly 7,000 rare…

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such issues during a recent talk at the New York Genome Center. Minssen directs the Center for Advanced Studies in…

I look into my son’s eyes and see beauty. I see the vibrant green, which fades into a blue that rivals the sky. Down in the lower left part is a spot of brown that never changes. His eyes give us a reflection of his soul. Though change is all…

When my youngest son, Caeleb, was 5 years old, he participated in our church’s yearly Easter egg hunt. We divided the children into younger and older categories to help even the playing field. The smaller church members started first, gathering as many eggs as they could find. After the little…

We all enter history at a different point; our entry into the timeline of the world marks where the future of us begins as individuals and families. Sometimes, we accelerate into the on-ramp that launches us, and sometimes we bumpily move toward our mark. On our first date, my now-husband…

The first Blood Advocacy Week, which promotes activities to showcase the importance of maintaining a safe and continuous blood supply and advocate for changes in policies that strengthen blood supply chains in the U.S., will take place April 24–28. Hemorrhage, or bleeding, is the leading cause of preventable death…