I hate to be a killjoy, I really do. And I hate being an alarmist even more. Trust me, I know there’s nothing more annoying than that one guy who…
What do you do when your four-year-old daughter first notices a man with a prosthetic leg? A coworker picked up the story in a grocery store when his little girl…
Want to join in on a Waldenstrom’s Macroglobulinemia discussion, but there isn’t one near you? Well, this might be a great opportunity to take part in one from the comfort…
Chances are you grew up with the fragrant scent of baby powder perfuming the air. Your mom may have used it to prevent your diaper rash or to sooth herself…
This year marks the end of a second decade of achievements for EURORDIS, now formally known as EURORDIS-Rare Diseases Europe. EURORDIS is a non-governmental alliance that is the voice of…
Most people do not enjoy going to the dentist, but for patients with down syndrome, this normal task is even more of an ordeal. Patients often have a difficult time…
If you are living with myasthenia gravis (MG) or any other rare disease or medical condition, you may have the travel bug, and travel insurance may be worth the investigation. Let’s…
When you need help with a problem, where do you turn? Many people these days turn immediately to the internet. From Googling to settle a bet to researching a doctoral…
Diamond Blackfan anemia (DBA) occurs when the bone marrow in one’s body either does not produce red blood cells or doesn't create enough of them. Sometimes called Blackfan Diamond anemia,…
Growth spurts? As an overachieving parent, I couldn’t get enough of them. I was the kind of mom who wanted to remember each and every step toward adulthood. I didn’t…
Even though August is officially Psoriasis Awareness Month, Healthline recently put together a list of the top online advocates in the psoriasis community that are bringing awareness all year. Here…
As a child of the 70s and 80s, I’ve lived long enough to see my geeky obsessions burst out of the shadows into mainstream pop culture and profitability. Take comic…
Having a chronic condition can be a scary thing, especially for a child. For a parent, hearing such a diagnosis can be devastating. Words like childhood cancer, protein C deficiency,…
What should you know about Tourette syndrome? How can you explain it to your child? These are probably just a few questions you may have if your child has been…
Much like the United States’ National Organization for Rare Disorders (NORD), E-Rare in the European Union was launched over a decade ago to bring together organizations that fund research for…
According to Dr. Steven Carson, of all the autoimmune disorders that are both chronic and joint-related, Sjogren's syndrome remains the hardest to manage. Standards of care designed to guide doctors…
Even though the diseases that Patient Worthy covers are considered “rare,” collectively, the rare disease community affects millions and millions of people worldwide. Despite this, there is a huge socioeconomic…
Chronic granulomatous disease (CGD) is an inherited primary immunodeficiency disease associated with granulomas, which are clumps of immune cells that form at the site of infection or inflammation. As a…
Jon Milne is on a quest to race across the seven seas to help raise awareness of rare disease! Jon has always been a keen sportsman, aged 30 he had…
Being pregnant can cause some wonky things to happen to your body. Some go without saying—weight gain, strange cravings (jalapeño peppers on popcorn), fatigue (tbh, you’re carrying around another human…
It started slowly. Mom left her purse at the grocery store. She forgot to turn off the stove and scorched the tea kettle. Frequently, she began a task, such as…
An immensely frustrating aspect of living with a health condition, and particularly a rare one such as idiopathic pulmonary fibrosis (IPF), is that other people might know nothing about the very disease…
If you've been looking for great psoriatic arthritis info, then you're in luck! We found an incredible website devoted to everything related to psoriatic arthritis. The aptly named psoriatic-arthritis.com is…
Every rare disease patient deserves an organization dedicated to working towards their specific condition. These organizations provide invaluable patient advocacy, information, support, and research funding for small communities that need…
You’ve been diagnosed with pulmonary arterial hypertension (PAH)… now what? Although there is currently no cure for pulmonary arterial hypertension, there are treatment options available and more are on the horizon.…
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