Charis is a Californian, advocate, activist, avid biker, blogger, and model. She was awarded the 2014 Progress in Policy Award by the Arthritis Foundation, Pacific Region last December for her efforts…
Most parents are eager for their child's first words. But as the Daily Mail in the UK reports, Stevie and David Taylor waited in vain for three years to hear…
Jake Krahe, a youngster from Montville Township, Ohio, has been living with a rare disease since he was 19 months old 19 Action News reports. The specific diagnosis is cystinosis, a…
If you’re one of the very few people in U.S. living with familial chylomicronemia syndrome (FCS), the odds are good you that you know more about it than your family…
Glucose. It means sugar, right? It's in your body, right? But how does it get transported, and how does your body know how much it needs to transport? Most importantly,…
Have you ever heard of Glut1 deficiency? Based on a story featured on News-Medical, neither had the parents of their diagnosed daughter 4-year-old Chloe Olivarez. Glut1 deficiency is a rare…
Heterozygous Familial Hypercholesterolemia (or HeFH), ever heard of it? It’s a mouthful. It’s also a condition that causes highly dangerous cholesterol levels and, if left untreated, can lead to heart…
Mangled finger? Severe bone bruise? Broken back? Nope, this isn’t a catalog of injuries from Fight Club—these are some real injuries the Miami Herald describes that now 21 year old…
It’s not often that rare diseases cross with pop culture, but when they do, it’s worth tuning in. This summer, Lifetime Television show, “The Balancing Act,” featured an educational episode…
For a disease that has so little attention drawn to it, there’s quite a few people that want to bring it to the forefront in the form of a traveling…
If your doctor told you that you could eat pizza, meat, and other high-fat foods daily you would probably sign up for that prescription immediately. But if the catch was…
When you have a rare disease like chronic granulomatous disease (CGD) and have spent the better part of your life being poked and prodded by (hopefully) well-meaning doctors, it’s easy to feel…
Standing in front of a crowd and talking about your HoFH can be intimidating. Imagine if that crowd was a panel of doctors and scientists with the US Food and…
Now in its fifth year, a team of highly motivated cyclists from Sandpoint has once again pedaled some 3,000 arduous miles across the United States, participating in the annual Race…
I can't tell you how many conversations I've heard between someone living with a chronic illness and a skeptic who is simply baffled by what they are hearing. To many…
For those who have been diagnosed with a chronic disease, you know it can be quite the process. And ankylosing spondylitis (AS) is no exception, especially because its symptoms can…
Anyone diagnosed with a chronic illness has two choices. Option 1: Accept it, live life idly, and wait to meet your maker. OR Option 2: Accept it, learn what the…
Muckle-Wells Syndrome (MWS) It's rare. It's real. It's ready to cause undue inflammation throughout one's whole body with symptoms such as fever, arthritis, and malaise. This genetic disease posed a…
Think you know all there is to know about ankylosing spondylitis (AS)? Think again. New research has revealed that people with AS are at a greater risk for having acute anterior…
Scientists Make Key Discovery in Rare Disease Category A gene that may play a role in solving the mysteries of autoimmune diseases such as type 1 diabetes, rheumatoid arthritis, and…
Blogger Zebra’s Child, who has common variable immune deficiency, recently posted about the struggle she finds staring herself in the face first thing in the morning. While looking in the…
Sometimes we want things to be explained to us in a way we can relate to. Mother of two and Common Variable Immune Deficiency (CVID) Blogger on "Through Accepting Limits"…
Vanessa Garrett, a woman with Crohn’s disease, common variable immunodeficiency (CVID), and Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), is grateful for her life despite her circumstances. Her family is…
With seven billion people in the world, there's a lot that makes us different from one another-- wealth, geographic location, family, interests. But our common ground? The ultimate equalizer of…
The Congress backed 21st Century Cures Act will be making its way to the House or Representatives' desks this week. After receiving a 51-0 unanimous vote from the The House…
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