When talking about genetic diseases, rare and otherwise, it helps to know a little bit about genetics. Every person's body has thousands of genes that are responsible for generating proteins…
[I ]took a deep breath and fell into a deep sleep. Little did I know, I would stay asleep for a month and a half. Welcome to the blog of…
As we close out the first week of the #PWMemeWeek contest, we have gotten a few submissions that are notably awesome! Not gonna spill any beans yet but y'all better…
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
I have early onset cervical dystonia. CD is a neurological condition that causes the muscles in my neck and shoulders to spasm involuntarily. For some people, it gets progressively worse…
Von Willebrand disease, or VWD, affects about 1% of the American population, but until recently, there was no dedicated therapy to treat it. If you're unfamiliar with this rare disease, VWD…
Dr. David Fajgenbaum was read his last rites- but he did not die, instead he turned the rare disease research model around. He is now working to expand the model…
Podría ser una historia de una novela de espías: Si bien se están pasando mensajes codificados, un extraño intenta infiltrarse e interrumpir la comunicación. Parte de la misión involucra el…
Today's talking tip meme makes us take a step back and think about how we approach compassion. It's not easy to be compassionate toward others if we don't show ourselves compassion when…
Socially active, super smart and patient worthy Dr. Kim Becher we applaud you! Patient Worthy found an awesome blog sponsored by the American Academy of Family Physicians (AAFP), Fresh Perspectives:…
Michael J. Fox Foundation Announces New Research Initiative for Pharmacodynamic (PD) Biomarker Like many other diseases such as Lyme disease, there is no current, easily measured bio-marker for Parkinson’s. Without…
Post Rare Disease Day 2016 the FDA's Office of Special Medical Programs announced a new program that would work to provide funding to patient advocacy groups and other organizations who were studying…
How celiac disease, vestibular neuritis, and cervical dystonia have ruined my answer to the most common way to greet people in America. “Hello, how are you?” Is it okay to say…
Did you know there are dos (that's Spanish for "two") forms of narcolepsy? Yep! Type 1. Type 2. Very similar in truth. Both involve excessive sleepiness. What distinguishes the types is…
When Julie Flygare was diagnosed with narcolepsy eight years ago, she had no idea what would transpire in her life as a result. She realized that very few people understood…
Alguna vez has tenido uno de esos días en los que simplemente no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de…
"Paralysis" "Convulsions" "Bizarre" "Frightening" "Anxiety" "Depression" These are just a few of the words you'll find on this narcolepsy infographic, posted by Tumblr user needlenightnemesis. If you don't live with…
Feeling crappy because of Lyme is the WORST. Then, feeling crappy from Lyme TREATMENT is scary. You think you know your Lyme, but then BAM! Treatment gives you random symptoms, from…
When my cat isn't distracting me with his exotic dance routine (he's just trying to get through catnip tasting school okay!? don't judge!) I do research on subjects that help…
I've got to give a HUGE shout out to the folks at Larson Heights Elementary in Moses Lake, Washington! One of their students, Michael Owen, was diagnosed with aplastic anemia…
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…
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