Wednesday of Rare Disease Week was Lobby Day! Patients, parents and advocates "stormed Capitol Hill" after a Lobby Day breakfast with speakers that included the newly confirmed FDA Commissioner, Robert M.…
So for those of you out there living with a rare disease, I am sure that you are very well educated of all the government and non-government organizations that work…
According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill's Rare Artist Reception. Olivia is the youngest of four daughters. She was diagnosed…
"His health may challenge him, but his mind and determination are as sharp as ever." For decades now, Doug Burr has been actively involved in healthcare policy, with a focus…
Today's special #MotivationMonday memes are dedicated to raising awareness about Narcolepsy through our awesome Patient Worthian Kristina. Kristina has had narcolepsy symptoms since she was 12 years old and it…
Hola Pittsburgh! La Fundación de Fibrosis Quística se une al equipo de New Balance Maratón de Formación en tres días separados mientras se entrenan para el maratón de Pittsburgh. Por…
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…
As most people with narcolepsy are probably aware, current treatments are designed to help manage symptoms rather than treating the underlying cause of the condition itself. Recent advancements, however, have pinpointed…
Florida resident, Brian Jackson’s, life changed dramatically when he was 15. That’s when the active high-schooler first started experiencing unusual and terrifying symptoms. First, he stopped being able to write…
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…
2016 Rare Disease Week on Capitol Hill. Amid all the medical experts, pharmaceutical executives, patients and patient advocates, there's a boy of 10. He sits quietly during the long hours,…
Complex regional pain syndrome (CRPS) is a condition characterized by prolonged or excessive pain together with changes in skin color, temperature, and/or swelling in the affected area that can be…
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…
Parents who have children with rare diseases know the struggle of seemingly innocent questions and conversations. "How is your child doing?" "Why can't your child play today?" "How strange! He/she was…
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…
Picture this: Little ol' you enjoying a night at the theater. Mid-movie, you drop to the ground, completely paralyzed. Your limp body looks lifeless; but you can still hear and…
I once confessed in an article on this site that I hate dancing because I'm not particularly good at it. Well, now I have another confession: I'm also terrified of…
"It's crazy that apathy can be allowed to cost so many lives" Dear Readers, How many of you are organ donors? How many of you had to pull out your…
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…
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…
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