Part 2- A Patients’ Perspective on Healthcare in America-The Ridiculous: That Time When a Revolutionary Act got Lost in the Senate. In July of 2015, the House of Representatives passed…
Welcome to this week's Editor's Choice! You won't believe this woman's story of waking up in a morgue because her rare disease wasn't recognized. And one of PW's contributors finally gets a…
Uno pensaría que en el mundo actual de la tecnología, estaríamos delante de la curva, especialmente en lo atinente a las pruebas de diagnóstico / pronóstico. Lo que pasa con…
Part 1- A Patients’ Perspective on Healthcare in America-The Good and the Bad Patient State of Union Lisa D recently spent the week in Washington, DC listening to some staggering statistics…
I just read an interesting article that explains how individuals with active Acromegaly have less fat and more muscle than those without Acromegaly. They also have more GH and perhaps IGF-l (a growth factor not…
Conozca a Brittany Brittany estaba desanimada después de ir a un restaurante y tener que aguantar que la camarera la ignoraba por completo cuando los sintomas de su distonía le hician difícil enunciar. Después de…
The European Organization for Rare Diseases awarded Actelion Pharmaceuticals the EURORDIS Company Award 2016, for their research and support of patients with Pulmonary Hypertension. “I am very proud that, together with…
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…
Acromegaly.care will be hosting an acromegaly patient webinar on Wednesday, March 16 from 12:00 – 12:30 p.m. EST. The webinar will feature acromegaly patient Casey, and research coordinator Lisa Mitchell from…
Patient Worthy asistió al foro anual organizada por la Fundación EveryLife este pasado martes en Washington, DC. Fue un taller de día completo acerca de por qué la incorporación de…
Ping pong can be added to the list of physical activities that aid Parkinson's patients with the debilitating effect of the disorder. And unlike some solitary exercise like walking on a…
Sleep health is vital to living well and being "healthy". The effects of sleep deprivation are real and can be devastating. Check out this video from neuroscientist Dr. Claudia Aguirre via…
El tiempo se acaba! Únase a nosotros antes de septiembre termina de hacer el noveno mes del Mes de Concientización Distonía. Si no lo ha hecho ..... #signtheDAMpetition Blogger invitada: Pamela…
Sometimes we look at our problems as if they were wrapped in a web of unintelligible contradictions and absurdity and we take it upon ourselves to unravel that web of…
He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…
Greetings Patient Worthians! This month we are highlighting Amyloidosis, a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no…
Happy Rare Disease Week friends! This week we have an exciting article on the first day of Rare Disease Week on Capitol Hill (though technically, the first day was at the…
Admitelo. Nunca superaste la noche de brujas Oh, por supuesto, es posible que no sea capaz de anotar esas barras de chocolate diversión de tamaño dulces de los vecinos más…
Si, el fin de semana del 9 de Octubre, vio a la Hereditary Angioedema Association (HAEA) en las nubes y feliz-- pero no de la manera en que estas pensando!…
“Chels, I really think you should get tested for LYME.” That's where we left off in Part 1 of Chelsea's post. And now... Part 2. I kind of balked at…
Here at Patient Worthy, we've written quite a bit about Narcolepsy. However, we can't help but think that taking a step back to answer some basic questions about the disease is…
Technology today is taking us to new (un)comfortable heights, at a pace few would be surprised by. For those who are living with narcolepsy, this self-piloting drone could be a…
Estimada Jessica, Te miro y veo determinación. Las cosas son tan difíciles para usted ahora, corriendo de un hospital a otro. Yo sé que usted nunca imaginó que su vida…
A la edad de 31 Andrea habían sido diagnosticados con espondilitis anquilosante (AS), la colitis, la escoliosis, cifosis, y la osteoporosis ya pesar de que estas condiciones han hecho su…
There's nothing more important than being able to create collaborative, meaningful and positive conversations between Healthcare Providers and Patients and vice-versa. That's why, for the remainder of the year, you'll…
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