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,…
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…
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…
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…
Imagine having a couple more hours until you have to get up for work, but can’t fall asleep. Or what about feeling sleepy when everyone around you is waking up?…
Huntington's disease is characterized by the progressive degeneration of nerve cells in the brain. As a result of the breakdown of these very important cells, the body and mind of a…
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…
Patients with hepatocellular carcinoma can look forward to the FDA accelerated approval of nivolumab (Opdivo) after prior sorafenib (Nexavar) treatment. Hepatocellular carcinoma is a common form of liver cancer that cannot be…
In late September, Food and Drug Administration designated "fast track" status to the research and development of CPP-1X/sul for adults diagnosed with Familial Adenomatous Polyposis (FAP). Overseeing the project are Cancer…
There are a lot of stupid videos on the internet. It’s amazing what can catch on and go viral. Some videos are funny and feature fur-babies being adorable. Those can…
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…
You will not often find me in the kitchen--a place that often plays a center role in the lives of families with cystic fibrosis. I have nothing against cooking—other than…
Researchers from MIT have recently identified a new way to stop the growth of glioblastoma brain tumors, bringing renewed hope in treatment options for this rare life-threatening cancer. Glioblastoma is…
You’re used to seeing Santa at his workshop, at the mall, under your tree—but at an art exhibit? Well, for one Alaska teen living with cystic fibrosis (CF) that became a…
CLICK CLICK! For some, the mundane sound a pen clicking is simply unbearable. You could be an easily peeved person or you are probably suffering from a rare disorder known…
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…
Facebook can be a real time suck. Especially, when you’re looking for a distraction or for an old high school flame. However, if you’re looking for an informational, inspirational Facebook…
Vertex Pharmaceuticals announced in late August that the U.S. FDA accepted applications of tezacaftor/ivacaftor for patients with cystic fibrosis (CF). Specifically, this combination treatment can be used in patients ages…
Natalie Stokes was always the curvy one in her group of friends. But when she started putting on more and more weight despite cutting down to only 1,000 calories a…
It's Fall "Y'all"! This week, we have PW Contribution from a man with CMT. We also have one on raising a child with rare disease. We also have good news…
Sometimes it takes a tragedy to create real change. Last year, Connecticut joined the short list of states to implement an ALD newborn screening test, after the parents of a…
How often do you reflect upon all the genuine reasons to be grateful? What prompts you to shift your focus from the sense of self to others? Do you find…
It's called Hereditary multiple exostoses (HME). Yes, quite the mouthful. Our friendly neighborhood scientists at Children's Hospital of Philly (CHOP) have been working diligently to study this rare bone disease…
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