The Lyme Disease Challenge can be fun for everyone! Even dogs can make some pretty funny faces and help raise awareness. Get your four legged friend in on the action!…
I was reading an article in Rolling Stone magazine about a young internet celebrity, and buried at the end of the overblown descriptions of the young man's activities on Vine…
Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten…
Parece que Pfizer quiere comprar una compañía sueca que proporciona un tratamiento para la enfermedad inflamatoria multisistémica de inicio neonatal, (NOMI). NOMI pertenece a una familia de enfermedades conocidas como…
For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the…
So my endocrinologist calls me and tells me I have acromegaly. First thing is she calls me and tells me I have this disease that I’ve never heard about before.…
According to the Center for Disease Control, there were nearly 35,000 cases of Lyme disease reported in the United States in 2014 (the most recent year on record). While that…
Are you ready for the Lyme Disease Challenge? Have fun and do something good at the same time: Challenge your friends and make the funniest face you can muster up! Lyme Disease…
Monday, May 16th was HAE Awareness Day. In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to "create an environment…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
Su americano promedio probablemente piensa en adultos de mediana edad o ancianos cuando escuchan la palabra artritis. Lo triste es que realmente no se les puede culpar. Tome este comercial…
At 17, she suffered excruciating chest pain, then collapsed. That is when Tess Dunn got the explanation that she had a hole in her heart. Born in the Philippines, Tess was…
Can you and your friends handle the Lyme Disease Challenge? Challenge someone and find out! Take a bite. Share a fact. PASS IT ON! (The funnest part is seeing your…
Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…
5 Preguntas que estás cansado de oir cuando tienes ICV: "Así que tienes problema digestivos Y respiratorios? Sí. Ambas cosas. Confía en mí me quedaría con uno si pudiera.…
The HAE community cheered in July of 2015 when another new therapy was approved by the FDA to treat acute HAE attacks. Now, the pharma company has another reason to cheer. The…
The right doctor and the right hospital can make all the difference when your child is diagnosed with a rare (and frankly terrifying) medical condition. That’s what London couple Sukhi…
Concern versus Worry We teamed up with Patient Worthy Acromegaly Contributor Rob to talk a little bit about two "conditions" that may not be considered "actual" diagnosis' by the medical community.…
This is part 2 of Marian'a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we proceeded with some more testing.…
Dear Ehlers-Danlos Syndrome, I have been living with you my whole life, but you started to show your ugly face 5 years ago. And during all that time I couldn’t…
Researchers at UCSF are searching for volunteers to participate in a clinical trial studying the effects of Deep Brain Stimulation on isolated/primary Dystonia. To participate you must meet the following…
What is a strawfie? A selfie (picture of yourself) while breathing through a straw. You've met Cassie Hawthorne in Patient Worthy's write up Model with Cystic Fibrosis Bringing Awareness to Disease earlier…
A new study by pediatric researchers at Harvard Medical School and Boston Children’s Hospital shows that about one in 10 parents catch mistakes that physicians miss. The study suggests that parents and…
Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder…
When most people think of Lyme disease, the first thing that comes to mind is usually a big, fat tick (immediately followed by manic itching). What’s harder to wrap your…
© 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.
