What happens when you’re not the cancer that everyone is talking about? Funding, research, and headlines can often be noticeably lacking when you’re just a run-of-the-mill, life-threatening gene mutation, according…
On October 22nd, the streets of Oakville, Ontario were sprawling with little monsters, marching out in support of their fellow Liam Cuttle and to raise awareness for Neuroblastoma. This rare…
Forty is the beginning of middle age. I remember when my father turned 40; everything was decorated black. Black balloons. Black streamers. Black icing on the cake. Actually, it was…
We live in a world of over 7000 rare diseases, but perhaps one of the rarest with the most unusual of symptoms is Prader-Willi Syndrome. This genetic disorder affects one…
Spinal muscular atrophy (SMA) is the leading genetic cause of infant mortality in the USA. So why aren't hospitals in Texas screening newborns for it? That's what a group of…
Memerto Tindongan, born and raised a member of the Ifugao tribe in the Phillippines, brought his traditional healing methods, crafting techniques, and old-world minimalism to the U.S. in 1991. As…
A California judge threw out a $417 million verdict against Johnson & Johnson in a lawsuit by Eva Echeverria - who claimed she developed ovarian cancer after using Johnson &…
The Bank of America building in Dallas, Texas will light itself up in turquoise on Saturday October 28th to show support for Dysautonomia Awareness Month. Everything's bigger in Texas, including…
Traveling is certainly possible and can be more relaxing with some pre-planning and organization. Some of these ideas may not be applicable to you and your family. I have compiled…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! Where: Residence Inn New York the Bronx at Metro Center Atrium Rooms A&B (second floor)…
Do you ever find yourself tossing and turning in bed for several nights in a row? You might just have a lot on your mind or you might be suffering…
It's been a great year for the Los Angeles Dodgers. Their loyal fans are eagerly awaiting their first World Series play in 29 years on October 24th. One loyal Dodgers…
GW Pharmaceuticals is a British biopharmaceutical company known for its treatment in multiple sclerosis. They are also known as one of the pioneers in the cannabis industry. Since they were…
Sean Dixon had his dreams of becoming a cop come true when the Suffolk County Police Headquarters made him a detective for the day, but after two years of battling…
New findings are coming from a recent study led by researchers at the Journal of the American Medical Association (JAMA) that could have long-term implications for Zika Virus research. Evidence…
A team of researchers at the Cincinnati Children’s Hospital Medical Center has developed a method to test for Gaucher disease using dried blood samples - marking a big breakthrough for the Gaucher…
There's a new treatment for X-Linked Hypophosphatemia (XLH) that may be available in the not-so-distant future. XLH occurs when the kidneys process phosphate abnormally, leading to excess phosphate loss in…
When I was 16 years old, I was uber-concerned about boys, prom, my pin-straight hair, boys, and how much gas I had in my car. But for 16-year-old Alexis Mae…
The International Myotonic Dystrophy Consortium was held in San Francisco last month and while Patient Worthy was not there in person we were fortunate to have a family reporting from the…
There's an app for everything right? It seems like every day a new app is being created to make life easier, for better or for worse. In the case of…
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…
Two-year-old Max Payne from Immingham, England, holds onto the yellow rail of his play pen as he stands up. He glances up at the video camera for a moment, and then…
There’s been a lot of talk in recent years about interdisciplinary projects. The idea is to put together people with different skillsets to address problems. The goal is for everyone…
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…
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