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,…
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…
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.…
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…
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…
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…
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…
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