We've all seen them - gymnasts jumping high, twirling low, and bending their bodies in ways most of us never thought possible! And if you think about it, gymnastics in…
The Internet can be a brutal place, thanks to anonymous bullying. But the Internet can also be a place of redemption, thanks to anonymous do-gooders! Case in point: According to…
So much of it “comes down to morals.” A couple struggling with cystic fibrosis may have up to a 50% chance of passing the gene on to their child if…
Idiopathic Pulmonary Fibrosis (IPF) most commonly affects aging adults, but for columnist Charlene Marshall, the disease struck in her late 20s. A diagnosis in and of itself is shocking, but…
Earlier last month, the second clinical trial for progeria was announced as completed. The trial was again funded by The Progeria Research Foundation, spearheaded by Drs. Scott Berns and Leslie…
Some good news for patients with Spinal Muscular Atrophy (SMA) and their families! There's a new booklet out with detailed information on how to navigate the increasingly complex health insurance…
As reported in Nature (an international medical publication), research scientists have uncovered the atomic makeup of an important protein found in those with Alzheimer's Disease. This is being touted as a…
Regular readers of Patient Worthy know the cost of drugs is a huge barrier to treatment for many patients and families. Additionally, the fewer people diagnosed with a condition, the…
WHEW! That week was short, wasn't it? We hope you had an awesome Independence Day Weekend in the US, and Canada Day in our neighbors to the north. This week,…
I was fortunate to have had optimistic role models during my formative years. They taught me that glass wasn't either half empty or half full, because the glass can be…
Has your healthcare provider ever talked to you about using an FDA-approved drug for an unapproved use (sometimes called an “off-label” use) to treat your disease or medical condition? It…
Have you ever tried to fit a square peg into a round hole? Short of taking a mallet to the peg, you’re not going to be successful in pushing it…
I was once walking through an outdoor festival near my hometown. There was a band playing off in the distance, but I didn’t know them or the song they were…
In a surprising development, Canadian researchers have discovered that a common drug used to treat acne may be of benefit to thousands of patients around the world who’ve been newly…
Adrenoleukodystrophy (ALD) is a terrible disease - but tell that to Ethan Jeffcoat, who spent his latest birthday playing with a python, alligator and more! ALD is a brain disorder that destroys…
Nope, we're not joking! US SWAT teams (Special Weapons And Tactics, military weapons-equipped law enforcement teams) have been asked to step in to help with backlogged FDA applications to get experimental treatments designated as orphan…
If you think this summer is hot, last summer was on fire for amyloidosis advancements and support. Our partner, The Amyloidosis Foundation produces a seasonal newsletter for all those interested…
According to the Indiana Lawyer, the case of Mikel An Krueger and her young son is a peculiar and sad one. It starts with the birth of Krueger’s son, AG,…
Imagine living every day with fear that paralysis may be coming. The idea always lingering in the background, ominous. That's the case for Kam Redlawsk. But she does not let…
Oh the joys of a 17-month-old toddler… I remember some of the typical behaviors of those days—the throwing heaving of everything and anything, the opening of the fridge a million…
3:15 a.m.? Are you kidding? Why am I awake and staring at a digital clock that says it’s 3:15 a.m.? Ever have a night like that? The more you get…
According to the Daily Mail, Harley Bond is a 4-year-old living in the UK. He has MPS III, or Sanfilippo Syndrome, a rare disease which has no treatment and no…
Image source: https://healthyhandyman.com/ On the website ShortBowelSyndrome.com, people living with the syndrome share their personal stories and experiences and give tips, tools, and advice to others living with short bowel syndrome…
Maybe you’re someone like me who didn’t know what a Hemophilia Treatment Center is or what it does. I never thought about treatment centers of any type, of course, there…
Losing a child is a loss like no other—the most devastating experience a parent can face. And for one daddy who lost his little girl to mucopolysaccharidosis, a very rare genetic…
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