You want to know what one of the important things a parent or caregiver for someone living with cystic fibrosis (CF) can do? It’s accept responsibility for managing the patient’s…
Some memories come to mind so vividly you remember every sensation: the smells, the sights, the sounds, the feelings. For me, many of my most vivid childhood memories involve the…
When I was a kid, I wanted to be a doctor. A doctor saved my life when I was very young and very sick. He was intrigued by my interesting…
Suzanne Burt’s daughter Sofia, was diagnosed with gastroschisis while in the womb. Gastroschisis is a rare birth defect where the digestive organs are developed outside the stomach. Suzanne believes that her…
Are you an adult who has been diagnosed with Dermatomyositis (DM) or probable DM? There is a new Phase II study currently recruiting that you may want to discuss with…
Happy Spring Patient Worthians! This week we have pieces from two rare women, one battling the rare disease pemphigus vulgaris, part of the pemphigus and pemphigoid family. The other is…
Diamond-Blackfan anemia (DBA) is a bone marrow failure disorder that is inherited, but very rare. It was named after Dr. Louis K. Diamond and Dr. Kenneth D. Blackfan, who were the…
Approximately one in 5,000 babies are born with a birth defect called gastroschisis. When a baby's intestines are protruding through a hole in the stomach wall resulting in the intestines being…
I read a pretty cool short and sweet article that you need to check out, written by a person who is living with narcolepsy. I’m so impressed by how well…
One of the hardest parts of being diagnosed with a strange condition you’ve never heard of—like Idiopathic Pulmonary Fibrosis (IPF)—is just getting your arms around what the hell it is…
To read our primer on Hemophilia, click here and to read our primer on von Willebrand click here. These next three bleeding disorders - grouped under the header "Platelet Disorders" -…
Fear of the unknown is a feeling we’ve all faced at some point. I liken it to standing at the edge of a cliff with nothing but a fathomless crevasse…
Devic's disease, also known as neuromyelitis optica (NMO), affects the spinal cord and the optic nerves. It is a relapsing-remitting disease, meaning its symptoms can appear and disappear. In NMO,…
This week is a small win for adrenoleukodystrophy (ALD) awareness and for these mini-bikers. Kevin Bean're and Tom Ford are mini-biking across the country, from Florida to California, to raise awareness…
An Australian couple shares their story of finding out that their daughter Aviana, has spinal muscular atrophy (SMA). SMA is a rare genetic disease, which effects the nerves that control…
Some lucky people live their whole lives only taking medication intermittently, like pain killers when they have a headache or acute pain. Maybe they take an anti-inflammatory when they have…
To read our primer on Hemophilia, click here. Pop quiz, Patient Worthy-style: What is von Willebrand Disease? And no Googling! For those who were familiar, A+! And for the rest…
Imagine what it would be like to feel weak every time a strong emotion took hold. Of course, we all know that feeling when our knees feel weak or our…
It was an ordinary day for 8th grade student Landon Severson. He was just starting the new school year and went to marching band practice. However, his day changed when…
You brush your teeth, put on your pajamas and climb into bed. Someone attaches wires and electrodes to your head, chest and legs. You drift to sleep under the watchful…
Most people freeze when they hear the first two notes of John Williams’s theme from the movie Jaws. Lovers of classical music and band nerds will wait a few more…
Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…
If dance is the universal language, then what does NC State’s annual Dance Marathon have to say--especially to type 1 tyrosinemia (TYR)? A lot, it turns out. The numbers seem…
After lobbying during Rare Disease Week on Capitol Hill a couple of weeks ago, I was convinced we were pretty successful with our congresspersons in showing them how vital NIH…
I recently covered an author who had some solid advice for drug makers in regards to the rare disease pricing problem. The following drug maker may or may not have…
© 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.
