Heavy metal band, Motley Crue, has been headlining shows since 1981, and for many of those years, Mick Mars, has been the guitar staple. His blistering leads and spot-on tonality…
Denim is a lot of things—it’s versatile, it’s comfortable, and with the right cut, it’s great for your butt. But is denim really life-changing? Thanks to Jeans for Genes Day,…
The Schriever Air Force Base tells the story of Caden Rose, an 18 month year-old diagnosed with a very rare genetic disorder called tyrosinemia type 1. The disorder makes the body unable…
If someone offered you a pill that could make you temporarily smarter, would you take it? Well sure, why not? Even if it was just long enough to pass that…
Grab your mask and cape because superheroes are keeping the hope alive for Jonah Aregood, a nine-year-old Common Variable Immune Deficiency (CVID) patient. Hometownstations.com reports a local comic book store…
A 3-year-old boy is dead. His 5-year-old sister was seriously injured. His mother had minor injuries. On a actually pleasant Saturday morning in Buffalo, NY,the Buffalo News reports a horrific accident occurred at…
Imagine you're a drummer in a popular band. Every time you sit down behind your drum kit, grab your sticks and queue up the music, the rhythm just flows out…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Allen’s Story, Part 2: A Soldier’s Last Hope Last time we left Allen he was…
Think Radon is just a dangerous gas? Think again. For thousands of years, cultures all over the world have been using hot springs to heal all sorts of ailments. Perhaps…
This Michelle Tanner look-alike (she even knows the signature "you got it, dude!") is one of the brave faces of GLUT1 DS. RareConnect.org describes Gracie as a bubbly, strong willed three…
As we join in the #DystoniaAwareness movement to make September the official month to support the Dystonia community, we will be posting blog posts from the Dystonia Muse herself, Pamela…
Imagine you live in New York City and a procedure that could save your life could only be conducted in Los Angeles. Well rationally you would just take a plane…
We have some great news! Patient Worthy is learning to speak Spanish! I mean 37 million people in America do, so it's time for us to as well. The heart…
Writing on the Internet can feel a lot like screaming into the void. You never know who can hear you or who even cares. But with the rare disease community…
Tyler Staab was like any other seven-year-old boy—energetic, rowdy, and super interested in sports and playing outside. But in February, 2005 his whole world changed, and that of his parents.…
Did you know September is Dystonia Awareness month! It's in the process of becoming nationally recognized, all it needs is your signature! Sign the petition, visit Dystoniaaware.org, or watch their video…
Caring for a child diagnosed with a rare chronic condition is no small feat for anyone, but this Mom, Rebecca Martin, is definitely rising to the challenge. In her blog,…
We last left Allen's story where this brave soldier had to leave the service due to the immense pain caused by a mystery condition. To get caught up on…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] 5 Reasons Why Sticking Yourself With a Needle Will Make You Smile Everyone hates needles,…
Surfers are known for their "hang-loose" no worry attitudes. But one thing that most people tend to overlook is their relentless spirit and the will to overcome all odds. Meet…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
How much do you hate having to watch your common variable immune deficiency (CVID) child infuse? It’s heart wrenching, not to mention, exhausting dealing with the push back from children who…
Ciara and Billy Nichol, who live in northwestern Ireland, were overwhelmed when a cry for help went viral. Their daughter, Ellie, suffers from one of the rarest diseases in the…
What comes to mind when you think of dancing? Blushing ballerinas? Fred Astaire cutting rugs with Ginger Rogers? Dancing Chihuahuas? Far be it from me to criticize either mental image,…
When a doctor says it’s necessary to do a lumbar puncture on your two-year-old son, momma bear instincts kick in. Health News Digest reports that’s what doctors recommended when Lisa…
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