Are you available on May 14, 2016? Are you going to be in Jacksonville, Florida? If you answered a double "Yes!" get ready to make a difference in the lives of…
“We all get along and race together. The family life, the company, the team, the social life, we are very much in this together.” – Manny Goguen Manny Goguen, a…
In December 2015, the U.S. Food and Drug Administration approved Uptravi (selexipag) for the treatment of pulmonary arterial hypertension (or PAH). Now, others around the world will have the same…
A recent event held in Houston, Texas, raised over $27,000 to help fund research and raise awareness about bone marrow cancer. The Frontier Fiesta 5K Run, now in its third…
Años antes de que me diagnosticaron la enfermedad de Lyme en etapa tardía crónica, que habían sido diagnosticados erróneamente con una enfermedad en el pecho, los ganglios linfáticos crónicamente inflamados,…
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
Here at Patient Worthy we’ve written before about the heavy toll Severe Combined Immunodeficiency (SCID) can have on families and about the lessons learned from the most well-known SCID case,…
I revisited an article about a clinical trial that focused on women with pulmonary arterial hypertension (PAH), and I’m still baffled, because it just doesn’t make sense. The information provided about…
I often find myself perusing the interwebs while at work (strictly for research purposes ?) and, like an informed citizen, I was catching up on some news. I stumbled on this lovely…
“My biggest passion in life right now is our team and just trying to help those with CF to be active.”- Manny Goguen Twenty-four-year-old Manny Goguen, a man living with…
In theory, I know there are people who don’t like chocolate. I have been told they exist. And I respect that choice. But my chocolate-loving heart really aches for people…
Leí un artículo recientemente por Andrew Smith que me ha desconcertado, no por él, sino más bien los hechos alarmantes que discutí acerca de las personas con fibrosis quística (FQ)…
As families and individuals dealing with rare disease, we all want research and answers sooner- but we soon learn how slow that process is. But check out the hope below: 9500…
One of the many problems with having a rare disease is that very few people know anything about what you, or your loved one, go through on a day-to-day basis.…
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