It is easy to feel alone after being diagnosed with a rare disease. You are surrounded by others that can only empathize so much with what you are going through,…
If you think this summer is hot, last summer was on fire for amyloidosis advancements and support. Our partner, The Amyloidosis Foundation produces a seasonal newsletter for all those interested…
Image source: https://healthyhandyman.com/ On the website ShortBowelSyndrome.com, people living with the syndrome share their personal stories and experiences and give tips, tools, and advice to others living with short bowel syndrome…
“Idiopathic Pulmonary Fibrosis: Partnering with Your Doctor,” is an interactive program for people diagnosed with idiopathic pulmonary fibrosis (IPF) and their caregivers. And you know what's even more awesome about…
Here at Patient Worthy, we aim to bring you rare patient news. It might not always be the news you want to hear, but it’s important nonetheless. Today’s dose of…
Sickle cell anemia is caused by abnormal hemoglobin, which is the protein that allows oxygen to stick to red blood cells (RBC) and travel throughout the body. This causes bone…
What comes to mind when you hear "palliative care?" Most people might think it only helps someone with end-of-life care. But did you know that palliative care can actually lift spirits…
Caregivers or care partners are often family members or friends who provide important physical, practical, and emotional support to a person with health issues such as sickle cell disease. Caregivers…
Huntington's disease (HD) is one of those rare diseases that prior to diagnosis feels like a coin toss. Will you get it? Will it pass you by? It's a genetic…
Loneliness and lack of social support can make a person feel overwhelmed, so I felt hopeful when I came across this cystic fibrosis (CF) website for kids. Children living with…
Trigeminal neuralgia is a chronic disease characterized by a sudden severe pain in the face, which can be unpredictable and last for few seconds up to a minute. These painful…
Children are full of wonderment and awe. Question after question after question (yes, the list is usually long), it can be exhausting answering every inquiry, but somewhere inside each adult,…
Fact: Tourette syndrome (TS) is recognized as a neurological condition that affects the brain and nervous system. About 1 out of 100 people are affected by this condition that's frequently…
One of the most frustrating aspects of living with a chronic or rare condition is the financial stress it places on patients and their families. Doctor’s visits and prescription drugs…
When most people think of bleeding disorders, they tend to think of Hemophilia. And if they know a little more than the average guy or gal—and let’s face it, if…
Can the Protein in Your Urine Detect Lyme Disease? Living with Lyme is tough, but diagnosing Lyme disease is one of the biggest challenges for doctors. Peeing in a cup to assist in…
We have all heard about how LIFESTYLE FACTORS can drastically EFFECT HORMONAL BALANCE and ultimately IMPACT WEIGHT STATUS. We read tips and tricks from fitness gurus on social media all…
Becoming a parent can be exciting and terrifying in nearly equal measures—along with the thrill, anticipation, and joy, there’s the fear of what could go wrong. Worrying about your child’s…
If you recall, here at PatientWorthy, we've talked a lot about "newborn screening." In case you missed it: What Every New Mom Should Know About Tyrosinemia What Every Pregnant Woman…
Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…
Never judge a book by it's cover, or a disease by it's name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of…
If you're like me, you nearly jump out of your skin when somebody makes a loud, unexpected noise nearby. Like the sneaky garbage truck that silently slides up to the…
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…
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…
above photo by Sandro Georgi Photography Throughout March, Patient Worthy is supporting the narcolepsy community in publishing all about living with narcolepsy and the #narcoleptictruth. The 2016 theme for Sleep Awareness…
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