Lately, I've been learning a lot about mucopolysaccharidoses (MPS). MPS covers a lot of territory. It refers to when the body is missing a particular enzyme--it doesn't matter which one:…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
Have you been looking for a resource on Ehlers-Danlos syndrome (EDS)? If so, you'll know that it's difficult because EDS is a rare inherited condition, and there aren’t many credible resources to…
I’ve gotta hand it to this German gal named Karina, who posted an article about her journey living with Ehlers-Danlos syndrome (EDS), a chronic illness that affects connective tissues in areas…
You may not know Erynn Carroll, but on 5 November 2016, she’ll be taking a step in the right direction—and you can, too! If you live anywhere near Central New…
If you live near La Jolla, California and have Complex Regional Pain Syndrome (CRPS)—or are a care partner for a person who does—here’s your chance to make a difference! There’s…
The human body is a magnificent machine, and each cell has a role to play. In a way, it's like a jigsaw puzzle that ordinarily is put together perfectly. The only…
Wouldn’t it be nice if you could talk to one of those “nationally known” specialists about your aplastic anemia? Well, if you can make it to West Palm Beach, Florida…
Is hosting a fundraising event meant to help people who have bone marrow failure diseases, such as aplastic anemia, at the end of October brilliant or insensitive? During the last…
When you have a rare disease such as Fabry disease, it’s easy to feel alone. As reported on the National Fabry Disease Foundation’s website, no one really knows how many…
"Fate whispers to the Warrior, 'You are not strong enough to withstand the storm.' The Warrior whispers back, 'I am the storm.'" World Rare Disease Day is observed each year…
Hey Patient Worthy Community! Did you you know that September is Rheumatic Disease Awareness Month (RDAM for short!)? Well, now you do! Don't feel bad if you didn't know. This…
Doggone, it feels good to fight amyloidosis! The condition causes abnormal proteins to be deposited in organs like the kidneys and heart. That's got bad news written all over it. But…
On Saturday, 29 October, 2016, the Adam Gardiner Fund will host Come Racing at Rosehill Gardens in Randwick, Australia. The event, like everything the AGF does, is intended to raise funds to…
I applaud the American Association of Kidney Patients for their efforts to raise awareness about a condition called Fabry disease. A rather rare genetic disease, Fabry disease seems to affect…
There's good news for people living with Hereditary Angioedema (HAE), the genetic disorder that results in sudden and severe swelling basically anywhere throughout the body. As those living with HAE know,…
If this makes sense to you, “Hey, look! Some dude on a sponge has wiped out and is going over the falls on a hollow little right!” then you need…
Wow! This is a pretty cool invention to help make life a little easier for people with disabilities. A start-up company called Neurable is working on a technology called BCI,…
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
Children’s books have a way of staying with you. My mom used to read to me all the time growing up. Just about every night before bed, she’d grab a…
Researchers at UCSF are searching for volunteers to participate in a clinical trial studying the effects of Deep Brain Stimulation on isolated/primary Dystonia. To participate you must meet the following…
Starting June 13th, better health will be delivered right to your e-mail front door - if you sign up! Seriously, 14 days of small, easy changes that result in a…
When you have a rare disease, your money goes to a lot of different things that people without health problems don't have to cover. Like medicine. Or therapy. Or hospitalizations. Or...…
Those of you who know your Greek mythology know that Achilles was a mighty fighter in the Trojan War who only had one weak spot: his heel. Apparently his mother…
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