The future is now. A small robot called AV1 will allow a sick boy to experience the classroom from home. When you're diagnosed with a rare disease, it's hard to…
There is a definitive group of people out there who love to hate on message boards and crowd-sourced information websites, like wikis. Their chief complaint is that anyone can put…
You’re used to seeing Santa at his workshop, at the mall, under your tree—but at an art exhibit? Well, for one Alaska teen living with cystic fibrosis (CF) that became a…
For patients, caregivers, healthcare providers, and anyone interested in learning more about liver diseases, there is a website called Focus. This website is organized by CLDF, which stands for Childhood…
When Zika arrived in Latin America a few years ago, something about it had changed. It was different, more devastating. This was very strange, considering the disease had existed for…
CLICK CLICK! For some, the mundane sound a pen clicking is simply unbearable. You could be an easily peeved person or you are probably suffering from a rare disorder known…
There's a serious, rising issue brewing over health care coverage for Phenylketonuria (PKU) and it's a steaming pile of outrage. If you haven't heard of this rare disease, here's the…
When someone you love has a rare disease, it can be devastating. But every day more information is being amassed to help combat these often deadly conditions. One of the…
Developing drugs for the myriad diseases that afflict humans is a complicated process. Of course, the chemistry behind developing said drugs is complex. However, deciding what diseases and dysfunctions to…
Facebook can be a real time suck. Especially, when you’re looking for a distraction or for an old high school flame. However, if you’re looking for an informational, inspirational Facebook…
Vertex Pharmaceuticals announced in late August that the U.S. FDA accepted applications of tezacaftor/ivacaftor for patients with cystic fibrosis (CF). Specifically, this combination treatment can be used in patients ages…
Natalie Stokes was always the curvy one in her group of friends. But when she started putting on more and more weight despite cutting down to only 1,000 calories a…
I hate to admit it, but when my Mom nagged me to eat lots of fruits and veggies, she was right. For most people, balanced nutrition helps keep our bodies…
There is a fungus among us. Imagine having cystic fibrosis and then ending up with a fungal lung infection. People who already have compromised lung health find it difficult to…
Recent research led by Swedish neuroscience docent Anna Falk at the Karolinska Institutet has uncovered new insight into the behavior of the cells of Lissencephaly patients. By reprogramming skin cells…
Times Square is the big time when it comes to celebrity. The Jumbotrons never grow dim. And throughout the month of October, some very special celebrities will be featured on…
It seems every disease has its day. According to the fabulous website World CP Day, for cerebral palsy (CP) that day is October 6. More than 17 million people around…
It's Fall "Y'all"! This week, we have PW Contribution from a man with CMT. We also have one on raising a child with rare disease. We also have good news…
HSG 2017 is coming your way Denver! The Huntington Study Group (HSG) is a global professional group dedicated to finding better treatments and ultimately a cure for Huntington Disease (HD). They…
Amber and Ryan Dollinger were preparing for the birth of their second son just as Hurricane Harvey was plowing toward them dead-on. They fled their Beaumont, Texas home and found…
This is the story of Eddie and Sarah Yang, their children, and challenges they face with a rare disease called congenital central hypoventilation syndrome (CCHS). Eddie and Sarah married in…
In a small UK Village, locals will be congregating at a popular pub to raise money for a disabled and epileptic boy whose family cannot afford his medical gear. Microcephaly…
Sometimes it takes a tragedy to create real change. Last year, Connecticut joined the short list of states to implement an ALD newborn screening test, after the parents of a…
How often do you reflect upon all the genuine reasons to be grateful? What prompts you to shift your focus from the sense of self to others? Do you find…
Dealing with a tragedy such as a brain tumor poses a great challenge to relationships. In this rare occurrence, a young couple from England were both diagnosed with a brain…
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