My son couldn’t walk, and placing him in a wheelchair proved to be impossible. Internal bleeding into a knee or ankle forced my “stinky boy” to remain in bed. I hurt for him, thinking, “If only he could get in a wheelchair, he could see the world.” We wished…

Helping others is nice. On the most basic level, helping another person can trigger positive emotions. It also creates a sense of belonging and enables one to connect with their community. And from a big-picture perspective, it gives one a sense of purpose, as they are contributing something good…

My husband, Jared, recently decided to stop cooking after he was injured during an epileptic seizure. It was a hard decision because he enjoys cooking, and food brings him genuine happiness. He enjoys preparing the ingredients for our daily meals. In his free time,…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

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…