We know that overexposure to the sun cause a serious burn-peel situation, but did you know that the sun can be especially risky for those with a predisposition to developing…
Rare Connect explains the life of Annie Kwakkel who was born with cystinosis, a genetic condition that affects approximates 1 in 100,00 to 200,000 newborns worldwide. Today, people living with…
"A protruding brow, lantern jaw, thick leg and arm bones", and incredibly crowded teeth were all characteristics of a recently found 3,800-year-old skeleton as reported by Western Digs. Each feature…
The world loves a good comeback story. And I am all for giving people their well-deserved “congrats” when they’ve faced down adversity and accomplished something fantastic. Franklin Gutierrez, for example,…
As a young girl, Remi Savioz wanted one thing. And no, it wasn’t a puppy, a bike, or even a trip to Disneyland… What Remi wanted was a GLUT1 DS…
We hate to be the bearer of bad news, but according to media outlet, Newswise, a rather unfortunate truth has been recently brought to light, revealing that people with spinal arthritis have…
C’mon needlephobes—you know who you are! Every family has one—and it’s okay. Breathe… Whether or not you or your loved one is a die-hard needlephobe, you’re probably not reading this…
Ever heard of CAPS? It’s not a hat or a Washington D.C. based hockey team; it’s a group of rare, inherited autoinflammatory diseases. CAPS, short for Cryopyrin-Associated Periodic Syndromes, is…
If you or your loved one has been diagnosed with ankylosing spondylitis (AS), here’s the latest down and dirty news from a clinical trial that matters—cause nobody wants to read…
Autoimmune diseases: Can't live with 'em; can't cure 'em... which is unfortunate when according to The Children's Hospital of Philadelphia, seven to 10 percent of the population in the Western…
Show us your moves, dystonia patients, show us your moves. At least, that’s what Pat Wyatt’s doing, according to a recent article published in the Shelby County Reporter. Wyatt has…
Basel, Switzerland, June 10, 2015 – Results from pharmaceutical giant, Novartis’ new one-year clinical trial called MEASURE 2 pivotal Phase lll were announced today. The randomized, double-blind, trial studied for…
10 years ago, Donna Driscoll was going about her life quite happily--she taught, was an avid tennis player, and started making plans for the future. The Connection Newspaper reports how…
Whatever your disease is, you shouldn't let it hold you back...not when the government can do that for you! GobyTruckNews describes the story of three men with narcolepsy who applied…
Sometimes a bit of skepticism is a good thing. RareConnect.org reports this was definitely true for Tina and Fernando when their sweet little boy, Nico, was diagnosed with epilepsy. At…
Epilepsy. Doose Syndrome. Lennox-Gastaut. While no parent expects to hear those words, he or she is even less raedy to learn that those words are wrong. RareConnect.org describes when Macie was only…
If I gave you 10 bucks right now, what would you do with it? Buy a ticket to a movie matinee, maybe, or pick up that new paperback you've been dying…
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…
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…
When Dystonia has got you down, just ride on. The UK site, DorsetEcho, reports that's Andrew Beale’s approach. Beale will cycle 33 miles through the streets of the United Kingdom…
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