It's September! You know what that means? Happy "Dystonia Awareness Month!" Maybe "Happy" is the wrong word... Because, while spreading awareness is always something to cheer about, dystonia is not. Here…
Thank goodness for the 21st Century! If you have been dying to attend this year's Global Genes Patient Advocacy Summit in California, but there's no way you are making it…
If you’ve been suffering from high cholesterol with dismally low-density lipoprotein (LDL) scores, here’s some breaking news that could save your life! The FDA has announced the approval of a…
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…
In July, Patient Worthy published BREAKING news about ADMA Biologics, Inc.'s promising new drug; RI-002, a specialty IGIV treatment for patients who are immune-compromised. RI-002 data proved the drug's ability to prevent…
The National Health Council and The Genetic Alliance are asserting the need for further patient engagement and incorporation of patient perspectives in drug development and the pharmaceutical industry. In…
September is almost over! #signtheDAMpetition Guest Blogger: Pamela Sloate airs some of her neurological dirty laundry in her original blog post, Dis*ease Unease. For most of my life, I’ve been…
This Meme Monday here are some funny and encouraging memes to share with your friends and family, no matter the rare condition. All that we ask is when you share…
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…
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