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…
Jenn Keeton was a longtime Children's nurse, surrounded by common and rare diseases among the youth. She never thought her own child would be born with one. Her and her…
Americans prize the ability to improvise, adapt, and overcome obstacles. We like it when people are faced with seemingly insurmountable odds yet find a way to maybe not cheat the…
Not being able to ride a bike, or open the door to your home, or reach a light switch is frustrating. For anyone with achondroplasia, these are an everyday annoyance…
We've written about CRISPR technology before, and it's potential for treating sickle cell anemia. But in a latest study done at the University of California, Berkeley, sponsored by the NIH,…
Residents of Omaha ran together during a 5K and 1K run to raise money for kids with cancer and their families at Lewis and Clark Landing. Hy-Vee and Pinky Swear…
One year old Evan Brenneman will have to live with hunger his entire life. Not because he's homeless or poor, but because Evan was born with Prader-Willi syndrome (PWS). This…
The world of rare disease saw a big win yesterday after a Chinese business man contributed $10M toward a new institute for rare disease. The University of Massachusetts Medical School…
When Dacarri Davis stepped on a piece of glass in the bathroom, he had no idea his life was going to change. Neosporin didn't help the glass cut, because something…
One author is using laughter to raise awareness about Hemochromatosis, or Iron Overload Disorder. It’s in the form of a book titled, “The Unexpected Consequences of Iron Overload: A Paranormal,…
According to a first-person story on the Global Genes' Rare Daily website, Tara Voogel and her family were plagued by a medical mystery for 40 years before Tara finally found…
My grandma drank three cups of green tea every day. It didn’t matter if it was 98 degrees outside in the middle of August or the coldest day in December…
There are people in society who seek to divide us based on what our differences are, such as color, ethnicity, religion, dialect, lifestyle, political persuasion, neighborhood, level of education and…
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…
Persistence is a tricky thing. In Hollywood films, persistence pays off. The dorky kid keeps asking the cheerleader out while he’s helping her with her homework until she finally agrees…
You are what you eat. We’ve all heard it before. Whether it was in a middle school science class or high school health class, you know how important it is…
Some doctors make it their life's work to study one disease. Maybe they've been affected or know somebody affected by it, making it a personal endeavor. Dr. Tsz-Kwong (Chris) Man…
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…
A 6-year-old boy from Cincinnati who was battling Stage 4 Neuroblastoma has passed away. His name was Walter Herbert, but he was somewhat of a celebrity in his community known…
Don't forget to register for the upcoming MDS event in your area using the information above! A MDS Patient MDS Patient & Family /Caregiver Forum will be held in Stanford,…
TGIF Patient Worthians! This week, we have two opportunities where you can spread some love. You can help a young boy with microcephaly and/or contribute to amyloidosis research. We also…
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