Elliott Cunnew, from Collaroy, Australia is what you might call a cool dad. Elliot is the father two kids, 20-year-old Amelia, and 17-year-old Lachie. During the day, he sells private…
Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…
I love Thanksgiving! It's a great time to catch up with friends and family. The one drawback is my diet is strictly controlled due to my rare disease, so at…
A perfectly coifed woman-child cuts you off on the way to the YMCA. Your children are copping some major attitude. Your spouse forgets to grab milk for dinner. Do you…
If you or someone you love has Cushing Disease (often confused with the umbrella term, Cushing Syndrome), you've probably heard about microadenas. Microadenas are the tiny, benign tumors that develop…
It's not every day that you hear about how nicotine may help lung disease. However, researchers at The Ohio State Wexner Medical Center are asking this question. They're testing whether…
Happy Pre-Halloween Patient Worthians! October is Dwarfism Awareness Month. Not only that, MDS World Awareness Day was just two days ago! Get the deets below. We also have a story…
Earlier this month, PBS released the "The Gene Doctors." The hour-long documentary follows the recent emergence of gene therapy as a novel method of treating rare diseases. The film discusses…
Vegan, gluten-free, dairy-free. Three symbols and phrases I constantly look for in food. I have to. Having chronic illness and rare disease has a tremendous impact on my digestion. Not…
This past Sunday, October 22nd, Steve Nugent, 53, crossed the finish line at the 42nd annual Marine Corps Marathon in Arlington, Virginia. A big group of the people who loved him…
You may have heard the buzz during the Zika outbreak in 2016. Many professionals suspected a relationship between the Zika virus and Guillain Barre Syndrome (GBS). Guillain Barre Syndrome is…
Check out part 1 of this LGS post here. After prepping: Arrive at the airport early – Ask the airline agent at check-in about getting your wheelchair assistance. Use this…
Spinal muscular atrophy (SMA) is the leading genetic cause of infant mortality in the USA. So why aren't hospitals in Texas screening newborns for it? That's what a group of…
Traveling is certainly possible and can be more relaxing with some pre-planning and organization. Some of these ideas may not be applicable to you and your family. I have compiled…
There's a new treatment for X-Linked Hypophosphatemia (XLH) that may be available in the not-so-distant future. XLH occurs when the kidneys process phosphate abnormally, leading to excess phosphate loss in…
Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
Two-year-old Max Payne from Immingham, England, holds onto the yellow rail of his play pen as he stands up. He glances up at the video camera for a moment, and then…
Date of issue: October 19, 2017 Boxing legend Michael Carruth was today firmly in Cystic Fibrosis Ireland's corner at Dublin's Irish Film Institute for the launch of a new awareness…
Sherry Jo Ward sits in an orange armchair, playing harmonica in the center of the stage. She leans forward on the matching ottoman for emphasis. Her walker is never out…
Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…
Rare disease research can feel like an uphill battle. First of all, rare diseases have a harder time receiving funding. After that, it takes months or even years to have…
Happy Friday Patient Worthians! This week, we have an awesome story about PW Partner Avery's Angels. We also have a PW Contribution about key lessons everyone can learn from the…
Sickle cell anemia results from a single mutation in the hemoglobin gene. The mutation creates a protein which has an atypical structure. This altered structure throws a wrench in the…
We've written about CRISPR technology before, and it's potential for treating sickle cell anemia. But in a latest study done at the University of California, Berkeley, sponsored by the NIH,…
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…
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