Are you looking for an Addison’s disease community so you can share similar experiences and learn more together? If so, Circle of Moms hosted by Popsugar may have the online…
For 26 years, police officer Dave Clement, put his life on the line every day for the people of Seattle. He often worked with the poorest of the poor, helping to…
For many, the 21st Century Cures Act could mean the difference between life and death: It will give patients access to drugs that they previously didn't have. Personally, I am…
De acuerdo con la Fundación de Fibrosis Quística, cerca de 30.000 personas viven con FQ en los EE.UU., y sólo alrededor de 1.000 nuevos casos son diagnosticados cada año. La…
PatientWorthy se ha unido a CysticLife.org para poner de relieve algunos de los miembros de su comunidad increíble! CysticLife.org surgió de un blog iniciado por CF paciente, Ronnie Sharpe, para…
It's Frida-yay Everyone! Celebrate it by catching up on this week's Editor's Choice. 'Tis the season of giving and we have a heartbreaking story on a case of gastroschisis that will…
So, it’s Friday afternoon, and you’re at work in a crammed meeting room. You’re looking forward to dinner with some friends. Only two more hours to go. All you’ve gotta…
Tyrosinemia is a hereditary disease that causes a disruption in the body's ability to break down tyrosine, an amino acid. The liver lacks the correct enzyme and, as a result, it…
Linus from the "Peanuts" comic strip is infamous for carrying around his security blanket while sucking his thumb. It is this same idea of a comfort object that has soothed…
Inspiration is important because it provides us with a glimpse of the fact that we can be great. But inspiration is not what fuels change, inspiration is fleeting. It’s what…
Vamos a volar su mente durante un minuto. Hay aproximadamente 7.000 diferentes tipos de enfermedades raras, y más se descubren todos los días. De acuerdo con genes globales, hay 30…
I vividly remember being four years old and going to the doctor with my mother and sister for a very important event: my sister and I were getting two vaccinations.…
Some people would give anything to be able to get take a nap or just fall sleep whenever they wanted too. But that is not the case for someone who…
Are you a person living with trigeminal neuralgia (TN)? Are you aware of the Facial Pain Association (FPA)? Well, you should be. This organization is incredible!! Focused on people with TN, this…
In the midst of an ugly American presidential post-election, I am actively looking for inspiration to distract me from this mess. And man, was I lucky! There’s a gal who’s living…
Alguna vez has tenido uno de esos días en los que no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de ho-hum.…
Mahatma Gandhi taught that we should endeavor to be the change that we wish to see in the world. (I believe Gandhi may have been on to something). I'm wondering…
The 21st Century Cures Act passed in the House last week but supporters have been waiting with bated breath for the verdict from the Senate. Today, it passed. In fact,…
We all need to be able to turn to family and friends when we've got a problem. There is a strong link between the support we receive and our well-being. It…
When faced with the unexpected, we often are overwhelmed with fear about of what lies ahead. If you or a loved one have dealt with a devastating medical diagnosis, many…
When your body has to work extra hard to breathe because of lung issues such as idiopathic pulmonary fibrosis (IPF), help it out by “eating healthy.” Digesting big, heavy meals…
He estado usando los sitios de citas por Internet durante los últimos once años. También he estado tratando con una enfermedad rara y sin diagnosticar durante los últimos cinco años…
Baby Isabella (pictured above) is in serious need of a hospital transfer. Her condition Gastroschisis, is rare. She needs a facility with people who have the most experience caring for…
I used to work with a woman who had a houseful of kids, so she always had an interesting story to tell. One story that stands out to me is…
How many of us are guilty of spending countless hours just scrolling through Facebook? I know I'm guilty of that. Just checking out pictures and watching videos. It's great to see…
© Copyright 2024 Patient Worthy
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.
