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…
A team of researchers from across the globe have discovered a previously unknown genetic immunodeficiency by analyzing five families at Boston Children's Hospital. The condition is linked to a mutation…
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…
Lisa Marie Basile finds living with an auto-immune disease frustrating. She also had a hard time getting a diagnosis because, as she says, "...many autoimmune disorders don't come with a…
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In the world today, there are 30 million Americans affected by 7,000 different forms of rare diseases, all in need of treatment. But because the diseases are so rare, treatment for them…
Ordinary Mom Delivers Extraordinary Gift of Life BROOKWATER, Australia. Corinne Heapy, a devoted mother of two, knows firsthand, what it’s like to give the gift of life. She’s heroically…
Erin can't recall a time in her life when she wasn't sick. Since the age of four, she has had an endless succession of infections, sinusitis, bronchitis, urinary tract infections,…
You know those commercials, "What would you do for a Klondike bar?" Think about that, but instead of getting ice cream you get to play baseball. What would you do? Highschooler…
Tahnie was 16 months old when she was diagnosed with the rare disease cystinosis. Her parents were told she would most likely not live past the age of 10. During…
Julia Domenick has spent nearly five years caring for her husband Andrew "Drew" after he suddenly became ill. "Drew just had his 50th birthday in rehab! We never thought that he…
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