Virginia Ventura, 25, woke up one morning when she was 6, and found she was unable to move her legs. There had been no warning signs that she remembered, but…
Amanda McGrory's teammates nicknamed her work out "The Stairway to Hell." Depending on how you feel about intense work outs, that could make you want to run away screaming, or…
If you have psoriasis, you're familiar with the itchy, red patches of skin. The patches can show up anywhere. Typically, they're found on elbows, ankles, knees, and scalps. They might…
Can you have too much of a good thing? Yes! Potassium, for one. It's an important mineral for human beings, essential for helping cells function normally. And that's just the start.…
Rare disease began shaping acclaimed photographer, Karen Haberberg's family years before she was born. Her parents had given birth to her older brother, who was diagnosed with Tay-Sachs. Tay-Sachs is a…
Twin three year olds, Marshall and Matthew, stole Linda Trapenier's heart the day she met them. She say she knew immediately "they were my boys." They're inseparable little boys, with…
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…
Last week, science continued to break boundaries and save lives. In this case, a new gene therapy was used by doctors in Europe to replace the decaying skin of a…
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…
Warwick Davis is a big name within the Star Wars community. Those that follow the movie universe religiously will know him for his role as Wicket the Ewok in Return…
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…
In general, sarcoidosis can affect various organs in the body including the lungs. Sarcoidosis causes granulomas, which are tiny masses of tissue clusters, to form. This leads to malfunctioning or…
In an article by Wendy Henderson on sclerodermanews.com, joint stiffness, arthritis, joint contractures, tendon pain, and nerve pain are the most common causes of pain for people living with scleroderma. The…
When you hear your doctor say the C word, it feels like the whole world stops or launches into fast forward. I’ve spoken to many people who have had that…
Zero. Nada. Zip. Usually having nothing isn't a good thing, but in the case of people with uncontrolled seizures--like those that occur with Dravet syndrome--zero (as in no seizures) is…
Whether you’re dealing with chronic myelogenous leukemia (CML), chondrosarcoma, neuroblastoma, or the host of other pediatric cancer diagnoses, it’s the actual diagnosis that can take your breath away. You can…
Are you grateful for bile? You should be. But chances are you never think about the importance of this chemical compound that's found in the liver--until it's not there, or…
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…
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