Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jenny Walker, and a Patient Ambassador, Laurie Call 1-844-514-6294 to register and…
According to Today, Quinn Hoover is an 8-year-old boy who lives in Nebraska. His body doesn’t produce enough alkaline phosphatase enzyme, causing his bones to be extremely “soft." The condition…
It is easy to feel alone after being diagnosed with a rare disease. You are surrounded by others that can only empathize so much with what you are going through,…
According to The Newport Daily News, for Danielle and Kyle Ray, it was an all-too-common love story. They were school-aged sweethearts who married in their early 20s, shortly after having…
Carol Littrell and Cindy Hamilton were coworkers. And according to JDNews, Neither imagined they would ever become much closer than that. But everything changed by one chance encounter. Carol has…
An Indian family found out their little girl, Parvathy, only three months old, had primary hyperoxaluria type 1. In simple terms, those words meant she was born without the enzyme…
Photographer Martin Schoeller has partnered with Olympic medalist and renowned author Dara Torres for the Show More of You campaign for psoriatic disease, sponsored by Celegene Corporation and Otezla® tablets.…
For a long time now, I have wondered if a more natural or even metaphysical treatment to the chronic scaly, itchy, red skin I was experiencing from my guttate psoriasis…
As a writer for Patient Worthy, I often focus on successful clinical trials and recent FDA approvals for drugs. Quite frankly, I think that this focus has blinded me to…
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…
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…
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…
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…
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…
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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…
Everyone knows lions are the kings of the jungle/mountain/movie studio. They're brave and ferocious! "Lion" not only describes the personality of one fun little boy living with Hunter syndrome (MPS…
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