Rare Disease Makes 30-Year-Old Look Like Your Grandpa… Seriously!
Twenty-somethings, how would you feel if you were quickly watching your body age? And what if you looked like an 80-year-old by your thirtieth birthday? Or how about this: What…
Twenty-somethings, how would you feel if you were quickly watching your body age? And what if you looked like an 80-year-old by your thirtieth birthday? Or how about this: What…
Athletes always seem to be on a level beyond reach of those around them, much like a revered saint or goddess. Their physical prowess is awe-inspiring, the pinnacle of human strength and…
So, let’s say you’ve lived most of your life with a bucket of symptoms you’ve never understood, and that doctors have never been able to diagnose. Symptoms like joint pain,…
What do you do when you can't get the care you need? If it's an insurance issue holding you up, then you'll probably end up spending countless hours on the…
For anyone suffering from chronic pain, you know what it’s like. If you haven’t had that luxury, here’s what it feels like: You feel like Frankenstein. Your friends and family…
For parents of children with dystonia, that frustration is a horrible, ongoing reality. Parents like Melissa Phelps from Gallaten, Kentucky knows this all too well—her young daughters Madison and Olivia…
Right now, you and I are smack dab in the middle of one of history’s greatest information ages. We have more ways to learn about the world around us than…
Okay, Dr. House: We've got first-time parents who claim their newborn is "cranky, fussy, projectile vomiting, and refusing to eat." Although they also say the child has a distended stomach,…
Cysteamine Bitartrate is its name, and savin’ lives is its game. It’s not often that you hear a drug referred to as “life-saving” (probably due to legal ramifications), but that’s…
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…