If you could alter your child's genes to ensure they wouldn't inherit a rare, chronic disease, would you? That's the ethical question swirling around scientific circles these days, and it's prompted…
No matter your situation, whether you have a rare disease or got cut with a can trying to feed your cat it's meal, we all have scars that tell a…
Every day we wake up, put on our shoes and meander through our daily activities. But for those living with a rare disease, meandering feels more like a daily fight…
I just finished reading about narcolepsy lifestyle adjustments on the Narcolepsy Network’s site, which I found helpful, but I’m really torn about what to do. Ugh. I have a colleague…
From time to time, whenever we are going through a tough time, whether it be at our jobs, in our personal lives or in our relationships, we tend to forget…
No tengo ninguna experiencia que viven con fibrosis quística o entiendo lo que se siente al pasar por el régimen diario. Yo sé lo que se siente al dar atención…
With all the hype around Virtual Reality headsets, 3D Printing and all other sorts of awesome and weird tech created to "enhance" our already hyper connected lives, the meme above…
I have been off of long-term antibiotic treatment for Lyme disease now for 6 months. How FREEING! During treatment I had so many chemicals running around my body. I had…
Shelly - Back at it again with the meme game! (if you've been living under a rock, click here to check out a kid made famous for wearing white vans...…
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…
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