Photo by Sandro Georgi Photography "My hope is that my condition finds cures so that other people don’t have to go through it and their kids don’t have to see…
Ehlers-Danlos Syndrome is a complex genetic disorder that is caused by defects in the body's structural proteins, also known as collagen. Hypermobility of the joints is one of the most…
One of the hardest parts of living with a rare disease like myasthenia gravis is just finding someone else who lives with the disease. MG patients are few and far…
In the past, a diagnosis of Huntington's disease offered the patient absolutely no hope. It was understood that a downward trajectory was the only way the disease would play out,…
Jeff Joseph. Record Spotlight reports he’s not like every 24-year-old trying to figure their way through this so-called “real world.” He’s different—in challenging ways and in freakin’ cool ways. Joseph…
Podrias llevar un estilo de vida más saludable y ayudar a disminuir algunos de los síntomas de la espondilitis anquilosante y la frecuencia de los brotes siguiendo estos pasos. 1.…
For all you dads out there who have had to learn how to be a father while dealing with the struggles of having a rare disease, you are an inspiration…
Dad's are great at a lot of things. Especially Dad jokes, the kind of jokes that are so cheesy that they are actually kind of funny. Happy Father's Day to…
Happy Father's Day Weekend! Whether you are a father with a rare disease, or a father of a child with a rare disease, you are a brave soul, because every…
Photo by Sandro Georgi Photography As a parent your main job is to protect your child from the terrible things in the world, but of course you know that one…
Fathers are the rock you can count on, always. Here's a poem to all you rare dads who are a dad and then some! Know that you are loved and…
Happy Almost-Father's Day Patient Worthians! This week, we have some important information on the rare disease myasthenia gravis in the spirit of June being it's awareness month. Also, have you ever…
There's good news for people living with carnitine palmitoyltransferase (CPT) deficiency and their caregivers! Ultragenyx recently released data from an open-label study of the treatment triheptanoin. In the study, five infants…
In the rare disease world, nothing causes rippling waves of excitement quite like a new drug announcement. So prepare for a tsunami, because that’s exactly what you’re getting… sort of. Spring…
Quick question: What does multiple myeloma have to do with myasthenia gravis (MG)? On the surface, not much—one is a rare cancer of the blood, the other is an autoimmune…
As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living…
En un momento dado, la medalla de oro ganando Singapur nadador Clemente Lim estaba postrada en cama durante dos días porque tiene espondilitis anquilosante, "Me daba miedo nunca nadar de…
It's not easy to be a Rare Dad and sometimes it helps to be around other people who are in similar shoes. SALT is a multi-day program created for dads of…
It's no easy battle, but for Tayjus Surampudi and many others, muscular dystrophy is a battle worth getting up and fighting against. Tayjus is a student at Harvard. And if…
"Health is not valued until sickness comes." - Thomas Fuller June 13-19 is Men's Health Week, and the last day is Father's Day. A great way to stay healthy is…
Amyloidosis Trailer: A Tribute to The Amyloidosis Foundation from katelyn Payne on Vimeo. This trailer for the Amyloidosis Foundation's documentary was created by a student whose mother has amyloidosis. It…
I wrote this poem about my father. He is not a rare dad, but I feel like he can be an inspiration for those going through hard times. He hurt…
Burning Nights is a chronic pain charity in the UK that was set up by Victoria Abbott-Fleming, a CRPS patient and author. The organisation gained official charity status in spring 2016…
Still not feeling well? You are not alone! The new, and validated survey instrument on quality of life for patients being treated for acromegaly, developed by Dr. Maria Fleseriu and…
Come one, come all! Well, if you have mucopolysaccharide (MPS), that is. The 30th Annual Family Conference is taking place this August in Colombus, Ohio and the National MPS Society…
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