Researchers around the world are constantly looking for new leads in combating chronic illnesses, and they’re making progress all the time. But it’s not often they make a discovery like…
Just how far does the apple fall from the tree? One in 12 people in the Western hemisphere suffer from autoimmune diseases such as juvenile idiopathic arthritis and Crohn's disease. A…
The first of its kind to be FDA-approved, the medication, CINRYZE®, works to prevent HAE attacks in teenagers and adults diagnosed with the disease. In patients with HAE, bradykinin, a…
So the more I read about Lyme disease, the more worried I get. With over 300,000 cases alone reported annually to the CDC, we don’t know how many undiagnosed people…
As anyone with Myasthenia Gravis will tell you, this disease is no picnic. In most cases it’s treatable with immunosuppressive therapies and people can live full—and fulfilling—lives with MG. But…
When most people think of bleeding disorders, they tend to think of Hemophilia. And if they know a little more than the average guy or gal—and let’s face it, if…
Here’s some interesting news for anyone living with ankylosing spondylitis (AS): A growing prevalence in AS around the globe has translated into increased spending on—and development of—more reliable treatments. Persistence…
Share this flyer with anyone you know suffering from myelodysplastic syndromes (MDS).
In the world of diagnostics and treatment, change is usually a slow, gradual process. But so far, this is turning out to be a damn good year for anyone interested…
Happy Memorial Day Weekend Patient Worthians! Memorial Day is the perfect opportunity to hang out with friends and family, and appreciate the times where life seems somewhat "normal". But before…
Joel is like a lot of people. For two years, he suffered from back pain that was resistant to treatment. He had physical therapy, medications, and was placed in traction--to…
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
Most parents spend at least part of their parenting life wondering, “What will I do today that permanently screws up my kid in the future?!” Which to be honest, is…
A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…
In the ongoing fight against cancer and all its various forms and permutations, all doctors can agree that a timely diagnosis is critical to successfully slowing or halting the spread…
As the father of a newly-minted teenager, I’ve come to understand all too well the fleeting nature of childhood “firsts”: First words, first steps, first artwork, and other moments in…
Children’s books have a way of staying with you. My mom used to read to me all the time growing up. Just about every night before bed, she’d grab a…
Press release: 24th May 2016 Breathe With Me Strawfie Challenge The Team GB Trampoline Squad are the latest in a fast-growing line of sporting stars and celebrities to back the ‘Breathe…
Endocrinologists are continuing to debate the possible link between acromegaly and cancer, but have not made an absolute connection--if anything, researchers have noted great inconsistencies in their findings. While that…
I was reading an article in Rolling Stone magazine about a young internet celebrity, and buried at the end of the overblown descriptions of the young man's activities on Vine…
Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten…
For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the…
Most of us are familiar with the film The Theory of Everything, which chronicles Stephen Hawking’s affliction with ALS. But there is another film just as compelling: Transfatty Lives by…
Monday, May 16th was HAE Awareness Day. In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to "create an environment…
Rare diseases often go undiagnosed because they are, after all, rare. A rare disease isn't usually the first thing anyone thinks of, in light of certain symptoms. It's only when doctors know what…
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