Winnie Nash, born and bred in Charleston, South Carolina, likes to think she’s sweet as tea. Passionate for people, stories, and a little bit of glitter, she has an especially soft spot for patients and their journeys. A writer with true disdain for clichés, Winnie catches every detail of a story—intently listening—craving the next word. Some may call it nosiness, but to her, it’s just wholesome curiosity.
A weakened immune system doesn’t have to stop the fun, that’s for sure. The Immune Deficiency Foundation will hold two Teen Escapes this summer— an awesome weekend away for teens…
Céline Dion. More than just a pretty face. More than just a bangin’ singer. And more than just a popular worldwide celebrity. Celine Dion in fact, is a philanthropist through…
The Corr family has had a tough year. Tough, sure, but equally as joyous. They’ve been adjusting to life with their year oldest daughter Harriet. Soon after Harriet was born came…
Writing 90,000 words is no cake walk for anybody, but Liz Nugent, a top author in the United Kingdom, made it happen despite the challenges that she faces as a…
Lady Gaga was onto something when she penned the lyrics “just dance; it’ll be okay.” Becca Friedman has been dancing her whole life, and despite her life-threatening cystic fibrosis…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
Question: How can healthcare companies provide “better patients with better services at better costs?” This was the question on everyone’s mind during the FORBES Healthcare Summit last month, especially Stacey…
Matthew Merryman, a seven-year-old boy battling a rare form of brain cancer, is a fighter. Point blank. In an article recently posted by The Frederick News-Post out of Frederick, Md.,…
Postural Orthostatic Tachycardia Syndrome. It’s one of those diseases that doesn’t get much attention, but still affects hundreds of thousands of people in America alone. Also known as POTS, the disease…
Beginning last year, Dystonia Europe launched a campaign that called people to do one thing: JUMP! Participants were challenged to JUMP for Dystonia, and throughout the past several months, all…
It’s not often that the “old” people are worried about the “young” people having heart attacks. But, unfortunately, that’s the reality for the Watts family. Their seven-year-old daughter, Avery, has…
Brothers Michael, 6, and Dylan Cavalier, 4, aren’t exactly like other boys. They don’t make mud pies; they don’t jump in piles of autumn leaves; and they certainly don’t dig…
Everyone remembers the kid in class who wouldn’t stop talking long enough to know the lunch bell rang. Or the bad dinner date that wouldn’t shut up about their cat.…
Let’s blow your mind for a minute. There are approximately 7,000 different types of rare diseases, and more being discovered every day. According to Global Genes, there are 30-million people in…
Colossal pain. Mammoth swelling. Hypersensitivity. Drastic changes in body temperature. Imagine being in that kind of pain all the time. Frankly, it sounds a little like a nightmare. Well,…
With rare diseases, there’s often a lot of information that’s unknown or mysterious to the general public, patients, and even doctors. Ehlers-Danlos Syndrome (EDS) is a group of disorders that…
After being diagnosed with a rare disease, there’s often a myriad of questions that follow: What am I going to do? What is this disease? Is it curable? And the…
Ankylosing spondylitis (AS) patients listen up because we’re talking to y’all! According to an article published to Medical Xpress, AS patients have lower serotonin levels compared to those without AS.…
An incurable disease that causes painful muscle spasms just got $45,000 closer to a cure. Dystonia is an uncomfortable condition that causes muscles to contract involuntarily, forcing the body to…
What gets teens more hyped than watching someone get a pie in the face!? Apparently, nothing! At least, Joseph Maronski and Madison Shaw seemed to think that was a pretty solid…
To SubQ, or not to SubQ? That is a question many people living with chronic illnesses face at some point in their lives. For some, subcutaneous injection (SubQ) is the…
When this Arkansas community rallies, they conquer. TJ Cluck was one of the thousands of people involved in the Joplin Tornado, a devastating EF5 twister that killed 161 people in…
Earlier this year, the FDA took bold steps, launching them closer to efficient rare disease drug development. And now, the potential improvement for rare disease patients could be huge. Why?…
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