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…
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…
Little Avery’s family has had to make some major changes ever since Avery was diagnosed with Familial Hypercholesterolemia (HoFH) in December 2014. As discussed in the blog, Avery's Fight, doctors…
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…
His Dad played alto Sax, but Neal played drums. And when I say played drums, I mean like nothing you've ever seen before! Those around him were in awe. As…
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…
For Shannon, a loving momma and avid blogger, the lyrics posted on her blog page, For Waverly. For Oliver. For a cure., are words she couldn’t wish truer: I want…
Amanda lucho durante muchos años para comprender cuál era la razón detrás de las hinchazones y el dolor que experimentaba frecuentemente. Sus doctores no sabían que le pasaba y ella…
People often debate whether things in life happen by fate, or by chance As explained on the UC Neuroscience website, all Jim knows is that a lot of coincidences had…
In efforts to improve the clinical development process for rare disease drug development, the EveryLife Foundation is hosting a full day forum today in Washington, DC. This annual scientific workshop…
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…
This Meme Monday we want to support our more than Worthy Dystonia patients and caregivers as we all come together and raise dystonia awareness. As we try to make September…
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…
This heart-gripping letter from the Damsel in a Dress, Lisa Walters, will change the way you think about people who are undiagnosed forever: I’ve been reading This is How: Help…
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…
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…
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