A Futurism article this week put into very human terms the ongoing question we face when it comes to rare disease treatment and Pharma: What is the cost of life?…
I was in fourth grade at the K-12 parochial school in a small, northern town in Wisconsin. After Kindergarten, we all were divided into two to three grades per classroom.…
Ceridwen Hughes is known for capturing visceral moments of reality in striking photography series. This time, she has navigated into the devastating world of rare disease and she's using her…
On Tuesday night, children hit the streets for their Halloween candy quest. Because of her rare disease, Emily Sawyer, had to stay in. But that didn't stop the community from…
Elliott Cunnew, from Collaroy, Australia is what you might call a cool dad. Elliot is the father two kids, 20-year-old Amelia, and 17-year-old Lachie. During the day, he sells private…
Sometimes patients receive the hard-hitting news of short life expectancies. What happens when a doctor tells you you won't make it to adulthood? What becomes your life priority? Sometimes, however,…
A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…
Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…
Many individuals living with hemochromatosis can lead normal, healthy lives. Most people living with the condition have the same life expectancy than those without. However, it's important to know some fast…
I love Thanksgiving! It's a great time to catch up with friends and family. The one drawback is my diet is strictly controlled due to my rare disease, so at…
An ongoing clinical trial called ARROW is making advances in the treatment of people with relapsed and refractory multiple myeloma. Patients who took a dose of a drug called Kyprolis (carfilzomib)…
A perfectly coifed woman-child cuts you off on the way to the YMCA. Your children are copping some major attitude. Your spouse forgets to grab milk for dinner. Do you…
If you or someone you love has Cushing Disease (often confused with the umbrella term, Cushing Syndrome), you've probably heard about microadenas. Microadenas are the tiny, benign tumors that develop…
A recent study, published in the Journal of Neurology, Neuroscience & Psychiatry, suggests that diets heavy in fat can increase the risk of relapse in children with multiple sclerosis (MS).…
Some diseases are so rare that it feels like researchers have given up on finding a cure. So was the case with Mucopolysaccharidos 1 (MPS I) and one such young…
As seen by her story on IDF's website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years. It's called Common Variable Immune Deficiency…
When is acromegaly like a scene from a movie? I know it's a stretch, but bear with me. I rarely go to the movies, you know, in a movie theater.…
According to Global Genes' Rare Daily, Alexi’s mother always knew her child was different. It would take almost nine years to find the proper ADNP diagnosis, but Alexi’s mother never gave…
It is Patient Worthy’s pleasure to report on the first International Acromegaly conference which brought together acromegaly support groups from East and West Canada,- The Vancouver and Atlantic Acromegaly support…
New findings are coming from a recent study led by researchers at the Journal of the American Medical Association (JAMA) that could have long-term implications for Zika Virus research. Evidence showed that…
Si usted o alguien que usted conoce tiene síndrome de Ehlers-Danlos (EDS), usted probablemente sabe mucho sobre él, que te hace parte de un grupo muy pequeño. No mucha gente…
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