As more states open their arms to the wonders of marijuana (for medical purposes and for fun), they're also opening up a whole new way to look at treating rare…
Here at Patient Worthy, we've written a few articles about misdiagnoses and how sometimes, doctors just aren't doing their jobs. But I think it's about time we honor the good…
In honor of liver awareness month, we've got some good news for people living with NASH, or nonalcoholic steatohepatitis. NASH is a kind of fatty-liver disease that is not connected to…
Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below. 1) Can you tell us a little about…
Hay una famosa frase de Harry Potter y las reliquias de la muerte, cuando (* SPOILER ALERT *) Harry habla con el fantasma Dumbledore por última vez. Atrapado en un…
When an arthritis medication can bring hope to so many more... Cystic fibrosis is a disease that affects the respiratory system and also the gastrointestinal system. There are 2 certain inflammasomes, called…
How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…
I read a report recently from the New England Journal of Medicine about a clinical trial and thought I’d share it with you because it’s about Fabry disease, a genetic disease…
My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease. My heart breaks as well for their parents, siblings, and grandparents…
When I hear the word Parkinson's, the first image that comes to mind is a long-haired guitar player on stage, captivating the hundreds of people who'd come to hear his…
Shocker! Did you know it’s possible to acquire hemophilia? There’s a professor who I’m obsessed with from Texas—that would be “obsessed” as in a healthy obsession! And here’s why: He…
Do you remember your first job interview? I sure do, and it was an experience to remember for sure. Being a recent college graduate, I had attended professional seminars on:…
Si usted tiene un amigo o miembro de la familia que recientemente fue diagnosticado con la enfermedad de Behçet, es el momento de educar acerca de la enfermedad, porque cuanto…
Can you imagine your toddler son having to get a lumbar puncture in order to be diagnosed with a condition that, despite the fact that you've never heard of it, he'll…
If you're reading this, I want you to forget who you are and take on the identity of a doctor, specifically an endocrinologist... starting NOW! GO! The Case A female…
In Himanshu Sharma’s article posted on Onlymyhealth.com back in 2014, it appears that the basics are there. But I’d like to offer my own take since I happen to have…
If you have Maroteaux Lamy syndrome, there's good news and not-so-good news. On the one hand, an understanding of this rare genetic disease has been reached by the medical community.…
I feel like shouting from the rooftop after reading about this 7-year-old girl named Yasmin. After a long hospitalization that spanned several months, she finally got released because her body…
Let's talk about medical marijuana for a moment. As soon as the word "marijuana" is introduced, people automatically think of users being "stoned," or they think of the fabled hippie…
When most people visualize Huntington's disease, a fatal neurological disease that causes the nerve cells in the brain to break down, the first thing that may come to mind is…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y se presiona el juego cuando comenzó a grabar un video explicativo de su rara enfermedad, con frecuencia mal entendida, variable…
There's an old fable that reminds me, in a way, of primary myelofibrosis, or PMF: A shepherd is in the desert with his camel, and as night approaches, he pitches…
Anyone living with Kallmann syndrome (KS) faces multiple symptoms: no sense of smell delayed puberty possible infertility complications affecting the kidneys, ears, heart, eyes, and parts of the brain Patients…
Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…
Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
