La iniciativa llamado el Patient-Focused Drug Development Initiative de la Administración Nacional de Alimentos y Fármacos (FDA por sus siglas en Ingles) ha anunciado la lista de enfermedades a las…
Chronic illness will forever affect a patient’s outlook on life. Sometimes, the outlook depends on how the patient physically feels in that moment. After my previously dependable health went downhill…
Because it's the month of #NERVEmber, we are highlighting CRPS and other nerve pain conditions. Diseases like CRPS and POTS often go unnoticed in the community at large. We are honored to bring awareness…
Meet one of the latest Immune Deficiency Foundation (IDF) Teen Council members, Baylee Gregory! Baylee was diagnosed with Combined Variable Immune Deficiency (CVID). Though any diagnosis is difficult, Baylee is…
If you or someone you know has Ehlers-Danlos syndrome (EDS), you probably know a great deal about it, making you part of a very small population. Not many people have an understanding…
If you’re a regular PatientWorthy reader, chances are you’ve been on the receiving end of this loaded statement from at least one doctor: “We’re going to need to run some…
Why is it that a disease discovered 127 years ago still falls so low under the radar? Not just that, but a disease affecting 4 million people in the United…
Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…
Not long ago, I started following some press about an adorable tween named, Maddie, from Lawndale, NC, who is living with Behçet’s disease, and I’m just smitten! At the ripe…
Kathryn is a wife and mother of two amazing kids. She lives with undifferentiated idiopathic periodic fever syndrome, cold induced urticaria, and POTS. Patient Worthy got the privilege of hearing,…
With rare diseases, there’s often a lot of information that’s unknown or mysterious to the general public, patients, and even doctors. Ehlers-Danlos Syndrome (EDS) is a group of disorders that…
"I’m tired of dying and I fear I’ll be dying for the rest of my life.” This is a powerful truth for anyone dealing day-to-day with a chronic condition, but…
Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…
What if you lived with chronic pain every day of your life--and not just little "ouchie" pains, but real 8 on a scale of 1 to 10 kind of pain? Kirah DeCarlo…
After being diagnosed with a rare disease, there’s often a myriad of questions that follow: What am I going to do? What is this disease? Is it curable? And the…
He’s been featured on the National Geographic Channel. He’s shaken hands with President Obama. He’s been stopped by the secret service. Even after all of that, Jason Dunn keeps going, and he’s taking his dystonia with…
For 90-95% of people living with sarcoidosis, the disease affects their lungs. As granulomas grow throughout the organs, they may experience coughing, chest pain, shortness of breath, and sometimes even…
It's unfair, but Hollywood thinks narcolepsy is funny. Over and over, characters suffering from the rare neurological disorder are portrayed as buffoons, falling asleep face down in their chicken soup,…
If you live in Connecticut, and happen to have a rare disease, efforts are being made to help make your voice heard. When you're one in a very few, it…
Dysautonomia (dis-aw-tuh-noh-mee-uh or dis-auto-noh-meeuh) is surprisingly common. Around the world, an estimated 70 million people are impacted by autonomic nervous system disorders. And while some forms are fairly rare, there are…
You know what they say about a guy with big feet... ...he's also got a BIG dictionary, ya know, since he's probably had to research acromegaly. Okay, maybe they don't say…
When lives hang in the balance, should the needs of a few trump the bottom line? That question was all too real for one Australian mother, Shanna Druisi. As reported in…
It's no secret that people are more dependent on technology than ever. We've got computers in our cars, TVs on our phones, and WiFi on our airplanes. It shouldn't be…
Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…
We are mid-#NERVEmber and gearing up for the Thanksgiving season! As we continue covering chronic illnesses like CRPS/RDS that can greatly effect the nerves, we are also highlighting some helpful tips and stats to…
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