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…
Indianapolis is known for its speedway, but this weekend, scientists, physicians and advocates for advancements in cystic fibrosis (CF) therapies are gathering there for the 31st Annual North American Cystic…
Getting a cold or flu is bad enough for most "healthy" people, but if you have a progressive, incurable lung disease, such as idiopathic pulmonary fibrosis (IPF), cystic fibrosis, COPD,…
Health scientists at the University of Leicester and University of Nottingham have heralded the discovery of a gene associated with lung fibrosis, such as idiopathic pulmonary fibrosis (IPF), as "a…
What can one little boy and his family do to fight a rapidly debilitating and (currently) incurable disease such as Duchenne muscular dystrophy? A lot. The diagnosis of a loved…
Too much of a good thing can be dangerous. For people with acromegaly, a rare disease caused by too much growth hormone (GH), an excess of this otherwise helpful growth factor can…
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…
How far would you go to eradicate a disease that impacts millions of lives? Would you cross the ethical line if it meant ending a source of suffering forever? Or…
Suffering alone with a rare, chronic condition is a terrible thing. But thanks to the National Porphyria Registry people living with this vexing disease have a way to stand up,…
The clock is ticking. If you or someone you love is diagnosed with a rare disease like hypoplasminogenemia, days -- often even hours -- can mean the difference between life…
Parenthood is one of the greatest joys for most people. But for Fanny Vlahos, a young Michigan woman, holding her infant son is nothing short of miraculous. Vlahos has cystic…
When we think of disabilities, a cane, walker or wheelchair may come to mind. Or perhaps you think of someone who is blind or deaf or has a learning disability.…
Did you ever consider who funds medical research? Most people assume that it's funded by the government. But, in fact, over half of the more than $100 billion (yes $100…
Have Neurogenic Orthostatic Hypotension or other MSA? Join the LIVE FEED and Watch the annual MSA Patient & Family Conference on Facebook On October 13-14, the Multiple System Atrophy (MSA)…
When it comes to treating a chronic and serious disease like idiopathic pulmonary fibrosis (IPF), sometimes you have to fight fire with fire. Or, as in this case micro fibrosis…
Researchers at the at Indiana University-Purdue University Indianapolis are studying slime. That's right. And it's not just any slime. It's the slime produced by bacteria that keeps antibiotics from being…
1994 was a headline year for many reasons. Figure skating champion Tonya Harding attacked her rival, Nancy Kerrigan, and was stripped of her world title. The "Chunnel" opened between England…
A recent announcement from the wonderful World Spina Bifida & Hydrocephalus Day website brought back some memories for me. Even before I became pregnant with my son, I heard about…
They look perfectly healthy. There's no outward sign of disease. But for millions of Americans, chronic and debilitating conditions such as idiopathic pulmonary fibrosis (IPF) could be lurking inside. October…
Is it possible to check into the hospital and become sicker? Absolutely. Let's say you're suffering from a chronic condition, such as multiple sclerosis, cystic fibrosis, idiopathic pulmonary fibrosis or…
You've probably never heard of Criciúma. It's a city in Brazil known for its lumber, tile, textiles, and coal. It's also, according to the website ResearchGate, the epicenter of an extremely…
When someone you love has a rare disease, it can be devastating. But every day more information is being amassed to help combat these often deadly conditions. One of the…
I hate to admit it, but when my Mom nagged me to eat lots of fruits and veggies, she was right. For most people, balanced nutrition helps keep our bodies…
Times Square is the big time when it comes to celebrity. The Jumbotrons never grow dim. And throughout the month of October, some very special celebrities will be featured on…
It seems every disease has its day. According to the fabulous website World CP Day, for cerebral palsy (CP) that day is October 6. More than 17 million people around…
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