Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
I hear a lot of talk about technology these days. There seems to be a growing group of people who argue that it creates more problems than it solves. It…
Lucy Babcock is in her fourth year in college and so close to acquiring that diploma and pursuing grad school. Most people suffer from senioritis but Lucy is battling out…
Hosted in part by The Transverse Myelitis Association (TMA)
It seems like copper is all the rage right now. A quick stop by any pharmacy shows copper-infused knee, ankle, wrist, and even back braces. Even the ironman of the…
Meet the Eaton family. Every since their son Vincent was born with Multiple Hereditary Extoses (MHE), they've united as a family to find ways to combat the rare disease. And…
As the world turns, so do advancements in gene therapy. Technology is changing our world so drastically that soon gene therapy will be simplified into a one-shot treatment. With it,…
Bruises. Ouchies. Boo Boos. Whatever you call them, injuries to the skin can happen anywhere on the body and can be caused by everything from vitamin deficiencies to a rare…
Every year, hundreds of people in America are infected with babesiosis, a tick-borne infection that causes malaria-like symptoms. For some reason, older white men have the highest rates of infection.…
Take a Florida style getaway to Orlando to attend the largest human genetics meeting and exposition in the world. Learn and hear from and among 6,500 scientific attendees and over…
Some breathtaking things are happening in the world of sickle cell anemia (SCA) that could potentially impact the lives of nearly 275,000 babies around the world and nearly 100,000 African…
Phoenix Richey was living a happy and healthy life until things escalated toward the unexpected. During a tumultuous 24 hour period, a strange allergic reaction spread along 65 percent of…
Happy Friday Patient Worthians! This week, we have an awesome story about PW Partner Avery's Angels. We also have a PW Contribution about key lessons everyone can learn from the…
When we think of disabilities, a cane, walker or wheelchair may come to mind. Or perhaps you think of someone who is blind or deaf or has a learning disability.…
Jenn Keeton was a longtime Children's nurse, surrounded by common and rare diseases among the youth. She never thought her own child would be born with one. Her and her…
We've written about CRISPR technology before, and it's potential for treating sickle cell anemia. But in a latest study done at the University of California, Berkeley, sponsored by the NIH,…
One year old Evan Brenneman will have to live with hunger his entire life. Not because he's homeless or poor, but because Evan was born with Prader-Willi syndrome (PWS). This…
The world of rare disease saw a big win yesterday after a Chinese business man contributed $10M toward a new institute for rare disease. The University of Massachusetts Medical School…
When Dacarri Davis stepped on a piece of glass in the bathroom, he had no idea his life was going to change. Neosporin didn't help the glass cut, because something…
One author is using laughter to raise awareness about Hemochromatosis, or Iron Overload Disorder. It’s in the form of a book titled, “The Unexpected Consequences of Iron Overload: A Paranormal,…
According to a first-person story on the Global Genes' Rare Daily website, Tara Voogel and her family were plagued by a medical mystery for 40 years before Tara finally found…
There are people in society who seek to divide us based on what our differences are, such as color, ethnicity, religion, dialect, lifestyle, political persuasion, neighborhood, level of education and…
Persistence is a tricky thing. In Hollywood films, persistence pays off. The dorky kid keeps asking the cheerleader out while he’s helping her with her homework until she finally agrees…
Some doctors make it their life's work to study one disease. Maybe they've been affected or know somebody affected by it, making it a personal endeavor. Dr. Tsz-Kwong (Chris) Man…
TGIF Patient Worthians! This week, we have two opportunities where you can spread some love. You can help a young boy with microcephaly and/or contribute to amyloidosis research. We also…
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