The following memes focus on keeping your happiness and badassery levels high! No matter what your struggles, whether it be dealing with a rare disease or fighting to create awareness…
En el sitio web fabuloso de Cystic Fibrosis Lifestyle Foundation, el blogger de FQ Brian Callanan ha emitido una llamada a la acción. Él quiere saber de todos ustedes si…
Here’s a heartbreaking story out of the UK that reminds us never to take anything in life for granted. A young mother with two children, Saffron Taylor, was recently diagnosed with…
Happy Day-After-St.Patty's-Day! As you all know, Rare Disease Week was at the very beginning of March and we have some awesome highlights for you below. One about a young artist…
Dear Body, I thought it was past time for me to write this letter to you. You see, I owe you an apology. I spend most days considering how you've…
Mark your calendars: The Global Lyme Alliance is hosting the 2016 Time for Lyme Gala on April 2, 2016. Where: Hyatt Regency Greenwich When: April 2, 2016, 6:30 pm-12 am (Midnight)…
Abdulatif al-Jasem's family was fleeing the violence in Syria when the seven-year-old began bleeding heavily. Just as they were about to make their escape on a smuggler's boat, the other…
When British father Matthew Parkes took his wife Pamela and daughter Sophia on an anniversary holiday to Majorca, Spain last year, he got much more than he'd ever bargained for.…
Bueno, la gente en la Comunidad de la fibrosis quística, escuchen! Un nuevo tratamiento dirigido para la fibrosis quística (FQ) puede estar en el horizonte antes vs después, y estoy…
If you’re reading this I need to ask you an urgent question. Are you mixed race? Specifically, part Filipino and part European? Yes, I know, it’s none of my damn…
I’ve gotta tell ya that I’m pretty damn impressed with a gal named Joyce. I first heard about her arduous journey with narcolepsy after reading her story on the Narcolepsy Network…
Ever wonder what the most annoying things doctors can do? just jump right in to give you advice without asking you some background information I mean c'mon... As a patient,…
Kids diagnosed with EB, or Epidermolysis Bullosa, have skin as fragile as a butterfly’s wings. DEBRA stands for Dystrophic Epidermolysis Bullosa Research Association, the patients association for this fragile skin disorder which…
What makes a young boy’s eyes light up? What makes him shuffle his feet with excitement or smile from ear to ear? One would think it would be a new…
Happy St. Patty's Day Patient Worthians! But really, what better day (other than all of Lyme Disease Awareness Month in May) than today to spread Lyme Disease Awareness? We have the…
Dear Immune System, I'm onto you. You're not fooling anyone. In fact, you aren't even being the least bit subtle. I know what you're doing. You're tired of the fight.…
Ya know that old wives’ tale about bad things always happening in threes? Well, here’s a perfect example of why you should never believe in "that old witchy stuff": Three AMAZING…
no one likes it when you're telling your story or sharing an experience and someone jumps to a conclusion about what you're saying, who you are or what the point…
Con el nuevo año se acerca he estado pensando en maneras que puedo estar más involucrado con mi salud. No es el peso y el ejercicio sin sentido perder norma…
I have two sisters, each with the remarkable talent to walk into a thrift store with only a few bucks and walk out with a brand new wardrobe. Growing up in…
When I walked in to Rare Disease Day 2016 at NIH, the atmosphere was full of hope, on a scientific level, legislative level and patient level. And I'm not just…
For many doctors, Castleman disease seems impenetrable. Not only is the disease incredibly rare (only affecting maybe 30,000 people in the United States), its innocuous smattering of symptoms are easily…
What would you do if you were told that your six-month-old daughter had a rare genetic disorder and wouldn't live past a year? Would you: A. Cry hysterically B. Punch…
There's nothing more important than being able to create collaborative, meaningful and positive conversations between Healthcare Providers and Patients and vice-versa. Another day, another talking tip courtesy of Edward Leigh from…
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…
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