Carol Town, 63, gave a big hug to surgeon, John Wallwork. They hadn't seen each other for 30 years. Carol attended a reception celebrating a professional accomplishment of Wallwork's, in…
Happy Friday! We have an FDA approval this week for rare cancer patients! We also have the details on a hypophosphatasia fundraiser. There's also an inspiring story of of a…
Doctors, medical resources, health classes, and moms agree: exercise is one of the best things you can do for your body and health. It helps manage some chronic conditions, and…
When a baby is born prematurely, things can get complicated pretty fast. The world is a challenging place for a child whose body isn't quite equipped to function on its…
In 2014, Stephen Hawking, one of the world's leading thinkers and most famous faces of amyotrophic lateral sclerosis (ALS), spoke out about the dangers of full artificial intelligence (AI). Hawking…
What if there was a non-invasive option for patients who need surgery for Parkinson's disease? Something that involved no scalpels, no incision, no opening of the skull. A new study…
Two years ago, a seven-year-old boy from Syria was in dire condition. 80% of his skin was gone; his entire body covered in wounds and abrasions. He still had some…
The FDA makes decisions that determine the lives and treatments of patients with rare diseases. Many of these people who make these decisions aren't impacted by the disease in their…
Meghan Waldron, a 16-year-old girl in Massachusetts, disregards comments about her size, “Sure I’m small, but so are poison dart frogs!” Meghan runs track and country, plays violin and cello,…
Did Wellmark Blue Cross and Blue Shield cross the line? Leading hemophilia groups, National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) believe that they…
Karen McLaughlin's exhibition Critical Path, hangs in at the Martin Batchelor Gallery until November, 30th. Her exhibit includes a combination of soft graphite drawings and bolder pastel renderings. The work is delicate,…
For now, Ann Marie Harte’s five-year-old son, Lewis, can still walk. He can no longer run, and he has a hard time with the stairs. The trampoline exhausts him, and…
Lawyers in Texas were enraged. They demanded the government give a 10-year-old girl with a rare disease back to her family. Rosa Maria Hernandez is a 10-year-old girl with cerebral…
At some point in your life, you might have taken a melatonin supplement from a bottle to get to sleep, or to get over jet-lag. Your body naturally produces melatonin…
Good news for mantle cell lymphoma patients! A new treatment called Calquence has just received approval from the U.S. Food and Drug Administration (FDA) for adults who suffer from this rare…
Rare disease research can be daunting. It's much more difficult for rare, or orphan, diseases to find adequate funding to develop treatments than it is for diseases that have larger…
If you or someone you love have Friedreich's Ataxia, you know how badly we need an adequate treatment. Friedreich's Ataxia (FA) is a rare disorder, which results in neurological and…
Happy Friday! We have some great news for the short bowel syndrome community. We also have info on a PBS doc you won't want to miss. One of our contributors…
Up until now, diagnosing ovarian cancer hasn't been so easy. Most of the time, it goes undiagnosed until it's already advanced. At that point, treatment is harder and less reliable.…
Dogs, with their pure hearts and boundless supply of affection, have made life better for humans for a long time. Dogs aren't just making people feel better by giving them…
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…
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