By now, you may have heard of the website, Pinterest, which came to the public's attention in 2011. Or, you may be one of millions who actively engages with the…
Hello Patient Worthians! Are you sticking to your New Year's Resolution so far? This week, we have more patient #NewYearNewYou contributions, the first of our video series, and a recipe that…
With rare diseases come common myths. Whether you have HAE, CAPS, HIDS, FMF, or any other combination of letters, you've probably heard an eclectic array of myths. Here on Patient Worthy, we…
[mlw_quizmaster quiz=1] Share this quiz with people you know who might know a thing or two about CAPS.
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…
Daniel's mother, Christine, considers him to be her "Special Little Boy." Born premature after five years of infertility and miscarriages, Christine thinks of Daniel as her miracle. Imagine her horror…
Welcome to the first of many posts related to Patient Worthy's Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has…
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…
Doctors don't always know best. That's something every parent whose child has a rare, chronic illness understands. These parents featured on Rare Connect finally got a diagnosis of Muckle-Wells Syndrome…
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…
You may not know Oliver Bailey personally, but he is one special boy. The brother of Tilly Bailey, who has one of the rarest genetic conditions in the world Neonatal-Onset Multisystem…
Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill We…
What do this woman... and this woman... have in common? Well, besides the obvious similarities between their beautiful blonde locks, both of these woman share an unusual connection: familiarity…
Neonatal Onset Multisystem Inflammatory Disease (NOMID) is one of the rarest genetic diseases in the world, but Tilly Bailey, 17, and her family know all about it. Tilly has NOMID,…
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…
If Frank Sinatra had CAPS, the lyrics to "I've Got You Under My Skin" might go like this: I've got you under my skin. I've got you deep in the…
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…
Let's take a trip back in time to the year 2001: A new president is sworn into office; the Global War on Terror begins; and a discovery is made on…
Say it with me: "NOH-mid" (or if you prefer, Neonatal-Onset Multisystem Inflammatory Disease...) "NOMID...is a rare disease that is often fatal. This video tells the story of Kayla Martínez, who was…
If you know the '90's with some clue about pop culture, the start of this headline means something to you. But "FCAS"? Maybe not... At the close of the 90's,…
When I see "Marvel" and a picture like the one below... ...I see the makings of a superhero! "A team of researchers at Trinity College Dublin has unearthed what they…
Have you read the first part of Kathryn's interview? Check out This Honest Mom Doesn't Want You to be Ashamed of Your Rare Disease. “Moving to the west coast has…
Kathryn is a wife and mother of two amazing kids. She lives with undifferentiated idiopathic periodic fever syndrome, cold induced urticaria, and POTS. Patient Worthy got the privilege of hearing,…
w an withIt’s kind of a badge of honor when a rare disease gets airtime on an internationally-loved television show. And maybe the doctors at Canada’s McGill University Health Centre…
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