If you or someone you love has bronchiectasis or COPD, you should be aware of the risk of alpha-1 antitrypsin deficiency, or A1ATD. Alpha-1 antitrypsin disorder is an inherited condition…
Pull out those calendars! If you’ve been searching for an opportunity to connect with others living with Waldenstrom’s macroglobulinemia (WM), or with those who help care for these individuals—this may…
Announcement is via the Child Neurology Foundation, republished here with permission: NOMINATIONS NOW ACCEPTED FOR: IS HOPE AND IS HEROES AWARDS The Infantile Spasms Action Network will once again sponsor Infantile…
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…
Nearly 100 million Americans live with chronic pain. That's a world of hurt. Chronic pain is defined as persistent pain that lasts more than three months. According to Johns Hopkins…
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…
It’s fair to say that many (if not most) Americans are inseparable from their smart phones, and that a device that was pure sci-fi 25 or 30 years ago is…
Most people are familiar with the old adage, “The squeaky wheel gets the grease.” My grandmother used to go a bit further by pointing out, “But the greased wheel 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).…
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…
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