Living with a rare disease? Struggle with insurance coverage? Phone calls with your medical insurance company are THE WORST! But, a necessary evil. After years of struggling with insurance coverage and payment, Patient…
Mycosis Fungoides (MF) is a rare form of lymphoma that affects usually affects the skin causing inflammation, tumors, plaques, and redness. It only affects 3 to 4 people in a…
Bernie Mac was a King of Comedy, but he was also living with sarcoidosis. April is sarcoidosis awareness month. What better time to honor one of the kings of comedy with…
Sjögren's Disease and Mastocytosis are two very different illnesses, but have one thing in common: they are VERY rare. The infographic below provides information about what the disease is, prevalence…
As a writer, every once in a while, I'll have an "A-HA!" moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.…
He was suffering from the rare myelodysplastic syndrome (MDS) and fell victim to acute leukumia. The former executive director of Uganda Wildlife Authority (UWA), Moses Mapesa passed away on the morning of March…
Measuring Late-night Salivary Cortisol (LNSC) is an alternative to blood and urine for both research and diagnostic use. No wonder patients are opting for salivary cortisol testing over blood and…
Ankylosing Spondylitis (AS) is a form of inflammatory arthritis that most commonly affects the spine and is thought to have its roots in genetics. As symptoms worsen, the inflammation can travel…
Congratulate this Mom- She knew something was wrong. She went through 19 specialists in 4 years. She eventually got a diagnoses. Her son, had Syngap1, a very rare, gene based,…
Congratulations to Kristin, the winner of a $500 travel stipend to get to the 2016 Acromegaly Community Bi-annual Meeting! Patient Worthy is so excited to meet you Kristin! We are excited to…
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…
OK... I hereby promise to never again make a blonde jokes. Why? Because two blonde sisters, Sam and Alex Kimura, are definitely no joke. They are a powerhouse of promise…
World PI Week is coming up later this month, from April 22-29. So what better way to celebrate than to learn what exactly PI is! Not to be confused with Pi…
When Myasthenia Gravis is diagnosed in a child, it is called juvenile myasthenia gravis (JMG). But for 4 year old Julius Chatman, the diagnosis was ocular myasthenia gravis. A very rare case,…
If there was one song that could get me poppin’ throughout my childhood, it would have to be “Parents Just Don’t Understand” by the Fresh Prince himself. Come on, you…
we may look different on the outside, but each one of us is unique on the inside, and that holds true more so when it comes to treatment options. I'm…
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