Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished for chronic deceitfulness and condemned…
If you are a parent of a chronically ill child, there are a million things running through your head every single day—day in—and day out. Enter the parents of a…
El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…
You can read all the books, write all the articles, and study all the patients, but one thing will always separate someone without a rare disease from someone with a…
When it comes to the different types of dysautonomia, there are often prescriptions doctors try (like Midodrine) to relieve some of the symptoms. But for me, the side effects outweighed the…
Depending on the intricacies of our personal health challenges, some of us may be motivated to take actions that others would find unreasonable. For example, I once met a man…
When Ashley Owen was a year and a half old, her family received news that would forever change their lives. As described through her silent but powerful Youtube video, Ashley…
In the "Don't judge; you never know what someone's going through" department.... Oh. My. GAWD! This woman is awesome! Growing up, this young woman blogger, whom we'll call Ezzie, was…
Q: What do Fergie, Josh Dumal and Scott Niedermayer have in common? A: They are celebrity spokespeople for CureDuchenne a nonprofit organization that raises awareness and funds research to find a…
In an ordinary world, one girl faces an unexpected fight. Fated to take on the mantle passed down by her mother, she must defend her life against this incredible foe. Will she deny…
Living in the 21st century’s wireless information economy can be both a blessing and a curse—there’s so much information out there, you can learn pretty much anything about everything. But it’s…
When you hear the word "narcolepsy," you may think of Rowan Atkinson's character in the movie Rat Race. He has narcolepsy, a disease characterized by frequent bouts of day-time sleepiness. Throughout the…
The Estevan Kinette's Club requests the pleasure of your company at their inaugural Princess Ball at the Beefeater Plaza in Estevan on January 16th. Please come expecting to dance,…
Happy Friday Patient Worthians! We are rounding out our Cystic Fibrosis campaign with CysticLife this week. For the past few weeks, Patient Worthy has been supporting CysticLife's collaboration with the Mayo Clinic for a…
This year’s holiday season was difficult. Allow me to explain by saying that it was great to be with my family after at least 20 years of not being in…
Living with Duchenne muscular dystrophy (DMD)? If you aren't familiar with Solid Biosciences, you should be! Here at Patient Worthy, we give credit when credit is due. We root for…
Traveling can be exhilarating. Exploring different locations, learning to appreciate how others live, and challenging your own perceptions. You can get this experience just from traveling throughout the US! But traveling…
Click here for part one and here for part two of Sue's Story! When we left off Sue was battling hives (everywhere) and had received the diagnosis of Chronic Idiopathic…
Henderson, NV, January 14, 2016 – The life science trade publication PM360 today announced that Patient Worthy™ won Gold in the category “Consumer Website” at the annual Pharma Choice Awards.…
Can you believe it? Patient Worthy has made it to the big times by winning an award for being the best patient-centric consumer website. We're stoked! But here's what really counts:…
Listen up, people! Are you living with a neurological disease or condition? Do you want to inspire people by sharing your personal story on video? If so, the American Academy…
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…
We at PatientWorthy are always on the lookout for ways to make living with a chronic illness easier. And we’ve heard about new technology that might just be a godsend…
Have you always wanted to share your story with Congress to ask for more help with your Rare Disease? The Every Life Foundation is making it easier with travel stipends…
Myasthenia gravis (which is Greek for "grave muscle weakness") is a neurological disease that causes a person's voluntary muscles to weaken. It mainly affects women under 40 years old and men…
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