Ostiio, a new Philadelphia-based medical device company, has made it its mission to improve the quality of life for children that suffer from complications of craniofacial defects (in the middle of…
We take most of our daily activities for granted. From working out at the gym to having our teeth cleaned, but for people living with hemophilia B what most people…
Duchenne muscular dystrophy is a very serious and fatal disease that slowly destroys every muscle in the body. This rare disease affects one out of every 3,500 people and mostly…
FAiRE is a clinical study program for children and young adults with Dravet syndrome. On their website, they provide information and an opportunity to get involved and be a study…
Think of it as a mashup between a standard swimming cap and the Cerebro device Professor Xavier uses in the X-Men series. Whatever you want to call it, you should…
I know I’ve said it before, but whatever, I’m saying it again: 2016 has been an awful year. Both personally and globally, it’s been the total pits, to the point…
¿Alguna vez tiene alguna pregunta acerca de la quema de una enfermedad rara que te mueres por saber la respuesta? Nosotros también. Un montón de ellos. Es por eso que…
¿Quién sabía que el colonialismo podría ser una de las principales causas de las enfermedades raras ?! Al menos, ese es el caso de muchos quebequenses. La tirosinemia, que afecta…
Piensas que el radón es un gas peligroso? Piense otra vez . Durante miles de años, las culturas de todo el mundo han estado utilizando aguas termales para curar todo…
On June 1, 2011, a patient diagnosed with myasthenia gravis (MG) died after falling in Wellington Regional Hospital in New Zealand. Those are the basic facts, but behind this tragedy…
What does pulmonary fibrosis, or scarring of the lungs, have to do with blood? Probably more than I'm aware, because when I first saw that a biopharma company specializing in…
Emma Gaul’s story is a good reminder of how quickly life’s plans can change when your body turns against itself. Less than two years ago she was a vibrant and…
You’ve probably heard the saying, “the journey of a thousand miles begins with a single step.” That’s very true, but it’s also true that getting to that first step can…
I have two sisters, each with the remarkable talent to walk into a thrift store with only a few bucks and walk out with a brand new wardrobe. Growing up in…
At 103 years old, you might expect your hands to shake a little, or maybe a lot. But what if you had an eagle-eyed medical student helping you with your meal? Suddenly,…
For more than half a century, Grandview, Michigan, resident Bruce Mannes has taken a drug Cuprimine (penicilamine) to manage his Wilson's disease, a genetic disease that prevents the liver from properly filtering the…
Michael Needham is a Vietnam veteran who served in the Navy before being discharged as a result of his ankylosing spondylitis (AS). In order to live with the pain of his…
It’s not often that the “old” people are worried about the “young” people having heart attacks. But, unfortunately, that’s the reality for the Watts family. Their seven-year-old daughter, Avery, has…
Eric Mevis, suffers from dystonia, in his case oral mandibular dystonia, a rare disease that causes facial muscles, such as those in his lips and tongue, to twist and contract uncontrollably.…
To SubQ, or not to SubQ? That is a question many people living with chronic illnesses face at some point in their lives. For some, subcutaneous injection (SubQ) is the…
Do you ever have any burning questions about a rare disease that you’re just dying to know the answer? Us, too. Lots of ‘em. That's why we're presenting our list…
Who knew that good ol' colonialism could be a leading cause of rare diseases?! At least, that's the case for many Quebecers. Tyrosinemia, which affects about 1 in 100,000 babies…
If you or your loved one has been diagnosed with ankylosing spondylitis (AS), here’s the latest down and dirty news from a clinical trial that matters—cause nobody wants to read…
Think Radon is just a dangerous gas? Think again. For thousands of years, cultures all over the world have been using hot springs to heal all sorts of ailments. Perhaps…
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