This introduction to Invisible Illness Awareness Week or as we like to call it #IIWK15 was written for publication on Patient Worthy by Lisa Copen, the founder and director of II…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Learn why this Viral Message is so Important After a waitress took her speech and…
Just like breaking up with your significant other can be hard to do, so can breaking up with your doctor. After all, he or she may have been with you…
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…
Meet Brittany! Brittany was disheartened after going to a restaurant and having the waitress completely ignore her when Dystonia made it difficult for her to enunciate. After first relocating to…
On Tuesday September 15th, several members of the Patient Worthy team were attending the Annual Rare Disease Scientific Workshop hosted by the EveryLife Foundation for Rare Diseases. The topic this…
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…
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…
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…
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