Shelly is a wife and mother of 2 amazing kids. She is also living with rare chronic conditions called Intracranial Hypertension and Primary Lateral Sclerosis among a myriad of…
Have you ever heard of "syncope?" First of all, it's pronounced SING-co-pee, and you're not alone if the term is new to you. Syncope is thought to be responsible for a…
I woke up bright and early last Monday in Bethesda, Maryland. As soon as my eyes were open I was excited...I'd be spending Rare Disease Day at NIH. I…
Acromegaly.care is bringing the patient community a webinar tomorrow March 16 12:00 – 12:30 p.m. EST. What is the Webinar About? How to manage acromegaly as a chronic condition, including coping mechanisms and key…
I first wrote about Julie Flygare back in 2015 and it’s awesome to hear that she’s as committed as ever to advancing the cause of raising awareness about narcolepsy. I got the recent scoop…
Kids. They may not be known as the most trustworthy of folk, but more and more people are saying it’s imperative to believe kids, especially when they say they’re in…
Pastel de calabaza, galletas de jengibre, pan, bastones de caramelo, y chocolates. ¡Oh, qué dulce estación! Hace mis hijos unas cuantas noches y yo pasamos un par de horas agazapados…
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…
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