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…
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…
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