For people who don't live with chronic painful conditions, such as hepatic porphyria, it's hard to imagine the type of intense pain Colin McEwen was in -- both physically and…
A wealthy do-gooder is championing Idiopathic Pulmonary Fibrosis (IPF). No, it's not Tony Stark (a.k.a. Ironman). But there is a mega-force super power uniting global innovators, researchers, and healthcare entrepreneurs…
For the estimated 100,000 to 200,000 people in the US diagnosed with idiopathic pulmonary fibrosis (IPF), finding a community is important. IPF is a rare lung disease, which you can…
Why are US children with cystic fibrosis improving faster than Canadian kids? Newborn screenings and child healthcare programs may be behind the improvement among US children with cystic fibrosis. There's…
Not all bacteria are created equal, but all play a role in sustaining--or breaking down--health. And when you're talking about children with cystic fibrosis (CF), a lung disease that impairs…
Although Parkinson's disease (PD) affects men and women equally, researchers have discovered an area of disparity: care giving. A study published this month in Neurology by researchers at the Perelman School of Medicine…
When you suffer with severe atopic dermatitis you can get pretty desperate to do anything to relieve the itch and other symptoms. So taking a bleach-bath is not out of…
Leukemia is a deadly serial killer that will claim more than 24,500 lives this year, but the Independent Citizens Oversight Committee of the California Institute for Regenerative Medicine (CIRM) just…
If there was a proven medication to slow the progress of a chronic and deadly lung disease with no cure, why wouldn't you take it? That's the question that researchers…
For people suffering from severe atopic dermatitis (AD), commonly referred to as severe eczema, relief may be in sight, according to a recent article in Dermatology Times. If you're one of…
Each year pharmaceutical companies spend millions developing and testing potential treatments. These drugs have to go through many levels of testing to make sure they are safe and effective. And…
Ninety years ago, when Sir Alexander Fleming discovered that bacteria left in a petri dish was killed by mold, a revolution in modern medicine began. Since 1928, penicillin and other…
Stevens-Johnson syndrome is a rare, serious skin disorder that affects the mucous membranes and causes painful blistering and peeling. These blisters can even form inside of the body, making it…
Finding a community is important for everyone -- but particularly if you have a chronic or rare disease. For the approximately 300,000 Americans with scleroderma, there's an active support group…
Advocates for people with rare diseases such as hypophosphatasia (HPP) are changing the world. Moms and dads, aunts and uncles, brothers, sisters, cousins, spouses and friends play a tremendous role…
Crohn’s disease may affect as many as 1.6 million Americans, according to the Crohn's & Colitis Foundation (CCF). Although it can strike at any age, Crohn's is more prevalent among…
Next time you order up fries, you might want to think twice before sprinkling on the sodium chloride—but not for the obvious health reasons. Sodium is a no-no for people…
On January 12-14, 2018 leading minds from around the world will convene in Orlando, Florida for the annual Heme Biosynthesis and the Porphyrias Recent Advances Conference. Yes, it's a mouthful,…
Move over Black Friday and Cyber Monday, the most important gifting day of the year serves a greater purpose. It's called Giving Tuesday, and for the past five years this…
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…
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…
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…
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.…
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…
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