TGIF Patient Worthians! This week, we have two opportunities where you can spread some love. You can help a young boy with microcephaly and/or contribute to amyloidosis research. We also…
Smart cars can apply the brakes for us. Smartphones can pay bills for us. Smartwatches measure blood pressure, temperature, and heart rates, as well as the passage of time. Now,…
You will not often find me in the kitchen--a place that often plays a center role in the lives of families with cystic fibrosis. I have nothing against cooking—other than…
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…
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…
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…
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…
While cliché, it is still true that children are the future. That is why it is so important that we find ways to protect them where we can and prepare…
Anyone who has had any contact with the United States' court system can tell you how overloaded and rushed it is. Criminal and civil trials will often have to be…
Most women take for granted their ability to become pregnant and bring new life into the world -- until they can't. For more than seven million U.S. women with polycystic…
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…
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…
Recently, in a new BBC documentary, a new innovative device was featured that offers a unique and engaging way for people with cystic fibrosis to handle one of the challenges…
When the community found the 37-year-old woman she was already dead. She had been brutally murdered, one hand had been cut off, and her teeth had been removed. She is…
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…
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…
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…
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…
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…
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…
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…
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