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).…
According to an article in The Campbell River Star, NHL stars, Rod Brind’Amour and Ryan Nugent-Hopkins of the Edmonton Oilers traded their hockey sticks for golf clubs (sort of)—all to…
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,…
We’ve all heard the expression, “A picture is worth a thousand words.” I once used it as an excuse to get out of drawing a new cover to Beowulf as…
Day two of Global Gene's 2017 Patient Advocacy Summit started out with a fire side chat with Christopher Austin, MD, the Director of the NIH's National Center for Advancing Translational…
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…
Great Strides, hosted by the Cystic Fibrosis Foundation (CF Foundation) is the largest national fundraising event for cystic fibrosis. Over 125,000 people a year lace up their walking shoes to…
For anyone with a life-threatening disease, news of medical breakthroughs is bittersweet. On the one hand, clinical trials yield evidence for another weapon in doctors’ arsenals to fight the disease. But…
I thank my mother for exposing my sister and I to the chicken pox at the same time as kids because I don't even remember having it. And while shows…
At the 2017 Global Genes Advocacy Summit, one of the break-out sessions discusses the drug development process. But it goes beyond this to educate us, the patients, on how imperative…
We have written about the anatomy of an HAE attack before. It’s a living nightmare. HAE is a rare genetic disorder. It is characterized by recurring, unexplained, severe swelling underneath…
Patient Worthy is fortunate enough to be at the 2017 Global Genes Rare Patient Advocacy Summit this week. While the personal stories that have been shared are highlights of the…
Parkinson’s disease is a degenerative movement disorder of the central nervous system that insidiously forms, even starting subtly with a single tremor, progressing into slurred speech, loss of balance, and…
When Alexander Fleming used penicillin from a fungus to fight bacterial infections, he knew he was onto something that would revolutionize the world of medicine. Now, a modern-day “Fleming” is…
Earlier this year, Kyle Petty made his way across the country for his annual fundraiser appropriately called "Ride Across America." While Petty, a famous NASCAR racer, says one of his…
No one likes being sick, yet Mom always finds a way to turn this rough situation into a special feeling. Mothers have a way of taking care of you physically…
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…
The clock is ticking to sign up for this big conference! Thousands are expected to flood the convention halls at the North American Cystic Fibrosis Conference (NACFC) this November. Indianapolis,…
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…
In 1973, the lifespan of a person with sickle cell disease (SCD) in the U.S. was only 14 years. Thanks to the dauntless efforts of researchers, scientists, and clinicians, today…
It can be pretty difficult to live in a world where very few people understand your rare disease life. Thankfully, there is a way to find others through the internet,…
It's been a tough year for the United States Congress and healthcare legislation - you might have heard, they failed to repeal and replace the Affordable Care Act nor 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,…
What do you do when your four-year-old daughter first notices a man with a prosthetic leg? A coworker picked up the story in a grocery store when his little girl…
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