Rare Disease Day at The Liberty Science Center



Find this story helpful? Share it with someone you care about.


Related to Rare Disease

3 Problems You Might Face When Finding a Doctor for Your Complex Illness

When you’re a chronic illness patient or have a rare and complex disease, you are constantly breaking up with your local team of physicians. I recently had a wonderful breakup. It was with a cardiologist who I didn’t feel was handling my treatment to my satisfaction, and I’m so pleased to have found another specialist [...]
Book with title chronic care management on a table. Pain management concept.

How to Create a Chronic Illness Management Plan

Sometimes when our pain or disease throws us a curveball, it can feel incredibly overwhelming. We can feel anxious and afraid. We often feel isolated in our pain and symptoms, even though we may be surrounded by loved ones. All of those feelings are normal. Partly, we feel them because we are experiencing more change. [...]
the author with "rare" colors painted on her face for rare disease day

If You're Rare, Here's What I Want You to Remember This Rare Disease Day

Statistics show there are around 30 million Europeans living with a rare disease. Most of them are caused by a genetic deficiency, while some are caused by environmental factors. Now, let that properly sink in for a second. That is only within Europe. Worldwide, there are so many of us, chances are you know someone [...]
the author with her nephew who has BPES

What It's Like When Rare Disease Causes Bullying

In honor of Rare Disease Day on February 28th, I’d like to introduce you to one of the great loves of my life, my nephew Hunter, or as I affectionately call him, Shrimp. Both Hunter and my sister Amy have a very rare genetic condition called blepharophimosis, ptosis, and epicanthus inversus syndrome (BPES). In fact, it [...]