Jana and Sara are 32 year old twins, born and raised in North Dakota. We had the pleasure of speaking with both of these precious young ladies about their rare…
The first of its kind to be FDA-approved, the medication, CINRYZE®, works to prevent HAE attacks in teenagers and adults diagnosed with the disease. In patients with HAE, bradykinin, a…
Here at Patient Worthy, we spill a lot of (virtual) ink talking about all aspects of living with a rare disease. Our goal is to be supportive and understanding, a…
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
Parker Wade is more than a cystinosis patient; he’s a Buckaroo, too! “Mothers of Buckaroos,” a Texas organization, banded together to raise funds for Wade, who received an expensive kidney…
When my daughter was born on August 8, 2012 I became a rare mom. I wouldn't know I was until 15 months later, but my little girl was born with a…
It's officially April and it's officially the WEEKEND! PW Contributor Alexis writes of how her experience with PTSD relates to going through the process of diagnosis and treatment of chronic…
Rare Conect explica la vida de Annie Kwakkel que nació con cistinosis,una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
A los 5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 am Ella convenció despierto por sus padres y, a través…
As any parent of a child with cystinosis will tell you, life with the disease can be like a roller coaster. Some days are filled with highs; others with lows.…
I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong. Some pictures are worth far, far,…
When Cheryl Simoens was born, she became one of a small number of babies born each year with cystinosis, a chronic and genetic kidney disease. Cystinosis is characterized by an accumulation…
When Hagan's mom tells the 12-month-old Irish boy that he's one in a million, she isn't kidding--and it's not exactly a compliment, either. Those odds refer to the fact that…
Serendipity (n): the occurrence and development of events by chance in a happy or beneficial way. As many of you probably know, the journey to a cystinosis diagnosis is no walk…
5-year-old Hadley Alexander isn’t normal. Every morning, her day officially begins at 7 a.m. She’s coaxed awake by her parents and, through a tube in her stomach called a g-tube,…
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…
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…
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…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
Everyone deserves to have a hero. Whether it's a fictional one that fights baddies or a gentle giant who use to tuck you in at night and read you bedtime…
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