Rare disease research can feel like an uphill battle. First of all, rare diseases have a harder time receiving funding. After that, it takes months or even years to have…
Let's talk medical foods, shall we? For those of you who haven't heard of them, a medical food is a food that is created in order to be eaten or…
The memories we have of growing up should be the type that we look back on and smile about. That is not to say that they all should be happy…
The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…
Some breathtaking things are happening in the world of sickle cell anemia (SCA) that could potentially impact the lives of nearly 275,000 babies around the world and nearly 100,000 African…
Brock Chadwick is a Halloween enthusiast and his love for all things spooky has shot around the world. Brock's parents asked strangers to send him Halloween greeting cards in order…
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…
Happy Friday Patient Worthians! This week, we have an awesome story about PW Partner Avery's Angels. We also have a PW Contribution about key lessons everyone can learn from the…
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…
Behind her smile of gleaming baby teeth and her bright, sparkling eyes hides a deadly disease. Sweet Iris has a rare condition; one she can barely pronounce—juvenile GM1 gangliosidosis. Yet…
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.…
Those that suffer from Acute Myeloid Leukemia (AML) undergo an arduous chemotherapy process and stem-cell transplant. It doesn't seem to be enough as the American Cancer Society states that only…
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…
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,…
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,…
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…
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