Ten-year-old Coleman Walsh always wanted to be a professional hockey player and now his dream has come true. According to the Daily Mail, he just signed with the Massachusettss's Babson…
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…
One young lady is working to bring awareness to Gaucher disease through blogging. Not only does Lauren Edwards share inspirational posts and pictures, she also shares the personal stories of…
What happens when you’re not the cancer that everyone is talking about? Funding, research, and headlines can often be noticeably lacking when you’re just a run-of-the-mill, life-threatening gene mutation, according…
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…
Memerto Tindongan, born and raised a member of the Ifugao tribe in the Phillippines, brought his traditional healing methods, crafting techniques, and old-world minimalism to the U.S. in 1991. As…
A California judge threw out a $417 million verdict against Johnson & Johnson in a lawsuit by Eva Echeverria - who claimed she developed ovarian cancer after using Johnson &…
The Bank of America building in Dallas, Texas will light itself up in turquoise on Saturday October 28th to show support for Dysautonomia Awareness Month. Everything's bigger in Texas, including…
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…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! Where: Residence Inn New York the Bronx at Metro Center Atrium Rooms A&B (second floor)…
New findings are coming from a recent study led by researchers at the Journal of the American Medical Association (JAMA) that could have long-term implications for Zika Virus research. Evidence…
A team of researchers at the Cincinnati Children’s Hospital Medical Center has developed a method to test for Gaucher disease using dried blood samples - marking a big breakthrough for the Gaucher…
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…
There's an app for everything right? It seems like every day a new app is being created to make life easier, for better or for worse. In the case of…
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…
Prescription drugs have always been overly expensive but there's now hope for these prices to drop down. On Tuesday morning, the Senate Health Committee held a hearing to discuss the…
Exploding paper-mache volcanoes. Solar systems made of styrofoam balls. Carrot electricity. I remember the sights, smells, and sounds of my high school science fair as it was yesterday. Those earth-shattering…
Last year in London, a flash mob took the streets and pounded out a choreographed routine to the song "I Am What I Am". They weren't just having a blast…
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…
Meet the Eaton family. Every since their son Vincent was born with Multiple Hereditary Extoses (MHE), they've united as a family to find ways to combat the rare disease. And…
As the world turns, so do advancements in gene therapy. Technology is changing our world so drastically that soon gene therapy will be simplified into a one-shot treatment. With it,…
National Drug and Alcohol Facts Week is the last week of January. American Heart Month is February. And October is the sentinel month for people with achondroplasia aka dwarfism. October…
Bruises. Ouchies. Boo Boos. Whatever you call them, injuries to the skin can happen anywhere on the body and can be caused by everything from vitamin deficiencies to a rare…
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