What would you do if your child was born with a rare neurological disease? So was the case for a small town boy. In Orangeville, Ontario, Ryder Ouderkirk lives with…
Most women take for granted their ability to become pregnant and bring new life into the world -- until they can't. For more than seven million U.S. women with polycystic…
I was laying on the cold, hardwood floor again after drinking phospho cysteamine(the earlier form of Cystagon, treatment for Cystinosis). My stomach was roiling and I was overheating from the…
Some diseases are a mystery. If the name of the disorder starts with "idiopathic," it means that no one really knows what causes it. That's the case with a rare…
In the ultimate feat of recycling, scientists at UCLA and the Howard Hughes Medical Institute have re-purposed the LeXis gene as a cholesterol-lowering agent. A recent press release issued by…
Welcome back Patient Worthians! We are back this week from the 2017 Global Genes Rare Advocacy Summit. Did you attend? If so, what did you learn? Let us know here. This…
The love of creating radio is something that can bring people together, according to the Riverine Herald. Whether it’s the perfect mix of melodies or the desire to connect listeners…
In Ancient Greece, you had to be part divine to be called a hero. Achilles' mother was Thetis, a rather minor goddess. Heracles’ father was a god you might have…
How does one raise awareness? Shouting on the street corner might work for a few hundred, or maybe even a few thousand, depending on how busy the corner is that…
When my son was eight years old he joined the swim team. For two hours a day, five days a week, he splashed around the pool mastering the Australian Crawl…
Recently, in a new BBC documentary, a new innovative device was featured that offers a unique and engaging way for people with cystic fibrosis to handle one of the challenges…
The Pulmonary Fibrosis Foundation (PFF) is hosting their biennial summit this November! Pulmonary fibrosis covers 200 different conditions that include sarcoidosis, IPF, scleroderma and other rare diseases. The conditions are characterized by…
When the community found the 37-year-old woman she was already dead. She had been brutally murdered, one hand had been cut off, and her teeth had been removed. She is…
Over the years, I've talked to dozens of people with Parkinson's disease (PD). They come from all socio-economic backgrounds. Rich and poor. Male and female. But the one thing they…
How can you inspire the world to be more heart-healthy--even if you have a rare disease such as pulmonary arterial hypertension (PAH)? That's the mission of this year's World Heart…
The Cystic Fibrosis Foundation (CFF) is hosting the North American Cystic Fibrosis Conference (NACFC) in Indianapolis, Indiana. The CFF is an amazing non-profit that aims to cure cystic fibrosis while…
POW! BANG! KAPOW! On a typical day, Thor, Batman and Wonder Woman focus on purging the world of archenemies that threaten our very peace and prosperity. And the way things…
Recent research has found new discoveries for those with neurodevelopmental disorders like Rett Syndrome. These new findings offer hope that those with mental disabilities like autism do not necessarily have…
There is a long-standing debate on the ethical ramifications of testing medical procedures and drug treatments on animals. One side argues that nothing can replace the valuable information gathered from…
If you missed the 2017 Global Genes Patient Summit's breakout session Strengthening your Care & Support Team, Home Team Advantage: How to Arrange for Palliative Care, we're here to fill…
Scratchy jeans. No. 2 pencils. Trapper Binders. Squeaky shoes. Floor polish. Helpful bus drivers. Smiling teachers. Ah, the scents, sights and sounds of the first day of school. I loved…
Scientists at the University of Georgia have identified a rare type of glycosylation (more on what that is in a second) which plays a major role in the function of…
What do you do when you are facing the unknown? We all have to at some point. And many of us will face the unknown while sitting in a doctor’s…
Causation vs. correlation. What does that even mean? If you ask your friend who majored in philosophy for a semester-and-a-half in college, you’ll probably get an explanation that sounds more…
Good news for patients suffering from neurological disorders that may have taken away their ability to walk. Multiple sclerosis, cerebral palsy, stroke and other diseases can often lead to paralysis.…
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