Super Bowl 50 is this Sunday! In case you live in a box, the Super Bowl is kind of a big deal. And why shouldn't it be? You take the…
Eurodis' Rare Disease Day is only a month away! The beauty of this honorable day isn't simply due to the cool events, the social outpouring, or the amazing spreading of awareness…
If the recent Powerball taught us anything, it's that humans love to get large sums of money. DUH! You've recognized the conversations. Co-workers standing by the water cooler talking about…
You can read all the books, write all the articles, and study all the patients, but one thing will always separate someone without a rare disease from someone with a…
Have you always wanted to share your story with Congress to ask for more help with your Rare Disease? The Every Life Foundation is making it easier with travel stipends…
We are happy to say that through our partnership with CysticLife.org and our awesome readers like yourself, Patient Worthy was able to hit one of it's New Year's Resolutions already....…
Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…
Although it is often called the "Most Wonderful Time of the Year", people can get pretty up-in-arms about holiday lingo and traditions. If you don't believe us, just ask Starbucks...…
Back to our interview with Mary! Miss the first part? Click here. Mary:- "I think education is power and the more you know about your disease process the more prepared…
Mary is a former registered nurse, a mother to four daughters, a wife, and a grandmother to one grandson as well as several “grandpets”. She’s an avid gardener; growing cherry…
Robert began his mission to raise awareness of Cystic Fibrosis after getting to know someone who had lived with it for forty one years. As he puts it; “She inspired…
Meet Patient Worthy’s newest contributor! Nikole is a mom with a background in education and incredible insight to the realities many chronically ill patients face. Diagnosed with Mixed Connective Tissue…
I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…
Gene therapy has been talked about for quite some time, but recent news has turned a hope into a reality for babies born with adenosine deaminase (ADA)-deficient SCID, severe combined…
Unless you live in a box (or don't frequent Amazon.com), it's Christmahanawkanzika time! The most wonderful time of the year! To continue the trend of the winter festivities, we wanted…
When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact,…
When browsing through Tumblr or scrolling past tweets have you ever found yourself asking, "What is a spoonie?" It's time to find out. First of all, a spoonie is a…
Familial Cold Auto-Inflammatory Syndrome is a very rare condition; set apart even from other hereditary periodic fevers. These unique traits are something that patients with FCAS are all too familiar…
CAPS FCAS, MWS, and NOMID all fall under CAPS with mutations in the same gene and share some overlapping symptoms. However, each has unique distinctions and there can also can…
Patients with CAPS are one in a million, but that rarity and its presence at birth (even infants with CAPS can be symptomatic), make it important for children with the disease…
The family has left town. The leftovers are dwindling. And yes, carols have once again dominated the airways. All that means is.... Thanksgiving was awesome, but it's Christmahanakwanzika time! But…
Don't forget to share this quiz with your friends and family to see what are they thankful for this Holiday Season!
Macy's Thanksgiving Day Parade, time with family, food, Charlie Brown, and yes, more food. What else could we be talking about but.... Thanksgiving! I'm sure you have plenty to be…
Cuando te encuentras navegando Tumblr o desplazando paso los tweets, nunca te preguntas, ¿Que es un Spoonie?, bueno pues es hora de saber. Primero que nada, un “Spoonie” es un…
A nadie le gustan las vacunas A nadie le gustan los ataques de angioedema hereditario. No es ningún secreto que las personas que están sufriendo un ataque de AEH no…
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