Neuroblastoma has been one of those rare diseases that affects the youth and nobody messes with our future generation! This form of cancer weasels its way and burrows deep in…
Zika! It was the talk of the town during 2015-16 and has thus quieted down, but the virus still lingers and scientists are still working to combat it. A quick…
When raising children, parents spent a lot of time discussing the challenges of child-rearing with others, reading articles and books, and wondering if we were doing the right thing in…
Des Moines news anchor, Elizabeth Klinge, is receiving quite the social media buzz after posting heart-warming photos of her daughter Hanalay and her notable port-wine stain. The photos garnered a…
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…
Come to Canada to learn and talk more about acromegaly among specialists, professionals, advocates, patients and spouses! COST Acromegaly Patients & Spouses: FREE For all other attendees: $200.00 no refund…
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…
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…
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…
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.…
Everyone knows that businesses compete. If two businesses are in the same market, they have to compete, right? If you choose to buy a Ford, then that means you didn’t…
Amicus Therapeutics is an American therapeutics company based in Cranbury, New Jersey. They're new groundbreaking treatment announcement, however, has very little to do with America, or even New Jersey for that…
Just days before Christmas 2016, the FDA gave a present to some of the children in the United States—they approved the first treatment ever to treat spinal muscular atrophy (SMA).…
Happy Friday Patient Worthians! It's the week of the 2017 Global Genes Advocacy Summit, and we have the details for you. First, we have a PW contributor's take on conferences,…
The eternal struggle of finding a treatment that works for you is a complex and infuriating process (as evidenced by a Managed Health Executive article). Not everyone’s body responds to…
Come join Global Genes in attending the 6th annual rare patient advocacy summit Meet rare disease advocates from all over the world in an educational conference setting to create, share,…
Recently on Recombine, a website dedicated to providing up-to-date blog posts about planning a healthy family, a story popped up from a young woman sharing her experiences about being a…
Everyone seems to have Epstein-Barr in my family. My mom, who has celiac disease and sciatica, and my sister, who has lichen sclerosis. Given that typical MDs don't seem to have…
I hate to be a killjoy, I really do. And I hate being an alarmist even more. Trust me, I know there’s nothing more annoying than that one guy who…
I don’t think it comes as a shock to anyone to say the costs of drugs are too damn high. The rarer the disease, and the smaller the patient population,…
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