Living with a serious illness affects more than one's physical health; mental health often suffers, too. Which is one reason Anna Barlow took note when she met Anna Sirieix. The…
Go on your average radio show website—when you check out the bios of your favorite hosts, putting a face to those funky fresh tones you listen to on your way…
Patient Worthy attended the EveryLife Foundation’s annual forum this past Tuesday in Washington, DC. It was a full day workshop about why incorporating the patient perspective into the various phases of developing drugs…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] This is Why People Are Shakin’ It for Dystonia Awareness Month When dystonia leaves you…
Patient Worthy is bringing another conference to you through live tweets (@PatientWorthy)! Yesterday and today our director of advocacy is attending the Orphan Drug Summit in Copenhagen , Denmark. Among…
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…
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…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] 5 Ways Your Butt Can Save a Life If you thought your jeans were only…
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…
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