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…
We've heard a lot about the biology behind Zika's causes of microcephaly but haven't heard a lot about the patients themselves. Keegan and Corey Kistenmacher had their daughter Cassidy on…
There are an estimated 7,000 rare diseases and each one takes its toll. The effects aren't just felt by the person with the condition, but also on those who care…
Lung Cancer Awareness Month started with a bang at the Press Conference and Panel Discussions today in the Holeman Lounge of the National Press Club. Two panels of renowned lung…
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…
As parents, we want to protect our children from harm and keep them safe. So when your child is suffering from a rare metabolic disorder, it's natural to feel helpless.…
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…
Every year, families travel across town and from around the country to be together for the holidays. This year, while you're sharing pumpkin pie and Black Friday Sale flyers, take…
Puberty, development, and menopause - most parents have found that explaining these concepts to kids, though entirely natural and unavoidable, comes with a certain degree of discomfort. In girls in…
The Alpha-1 Foundation has a website dedicated to Alpha-1 patients and caregivers. It offers a wealth of information and resources about about the disease. Alpha-1 Antitrypsin Deficiency (Alpha-1) is a…
Nothing puts "fun" in a fundraiser than holding that event at Walt Disney World. For the past 25 years, Disney has hosted an annual marathon to help support hundreds of…
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