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…
I'm sure you've heard these popular phrases: Don't judge a book by its cover Looks can be deceiving You never know what someone else is going through until you walk…
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…
Kathy is the momma of Emma, a nine-year-old girl who grew up relatively normal. She was spunky, energetic, and cheery. But things changed for Kathy and her family when Emma was…
If you're curious about narcolepsy from a first-person perspective, there's an awesome YouTube channel you should subscribe to. Sleepy Sarah Elizabeth is creating a video journal detailing her struggles with…
About a week ago, my best friend’s husband had a life-threatening emergency and was rushed to the ER. So when I got the call late that night, I too rushed to…
My story starts back when I was around 18 years old, almost 20 years ago. At the age of 18, I had my first DVT, deep vein thrombosis (blood clot)…
It can be hard sometimes for your friends, loved ones, and peers to know what to say when you’re dealing with chronic illness. “Feel better soon” Doesn’t really work. There…
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!…
In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right. I had no idea what was wrong. My doctors were…
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…
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