With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has…
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
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…
2016 Rare Disease Week on Capitol Hill. Amid all the medical experts, pharmaceutical executives, patients and patient advocates, there's a boy of 10. He sits quietly during the long hours,…
Happy Rare Disease Week friends! This week we have an exciting article on the first day of Rare Disease Week on Capitol Hill (though technically, the first day was at the…
Why does time always have to run so short? Anyone who has ever experienced kidney dialysis knows the grueling process--the waiting game you play until a kidney becomes available for…
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…
On their face, exercise and illness would appear to be diametrically opposed states of mind. But there’s plenty of anecdotal and scientific evidence to suggest that overall physical fitness can…
Life with chronic illness requires adaptation, and for kids diagnosed with cystinosis, adapting starts young. Sarah Larimore was barely out of infancy when her parents first heard the word “cystinosis.”…
Winters may be long in Canada, but the residents of Ontario’s Saugeen Shores are hardly cold-hearted. On April 1st, 2016, the Saugeen Shores Skating Club is inviting Ex-NHL players, figure…
The National Institutes of Health (NIH) recently published an important finding from a clinical trial that could affect those with cystinosis. The research is certainly worth reading--especially if you or your loved one has cystinosis. But…
Happy First Week of February! Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your…
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…
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
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…
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