Every year, actually every day, the FDA and similar organizations for other countries approve new medicines. Innumerable pharmaceutical companies work tirelessly for years to research, develop, test, distribute, and market…
Carl Rooney has seen everything SMA Support UK has done for his younger brother, Daniel. That's why he's running 2,107 miles. Carl is from an English town called St. Ives, and…
At the Myasthenia Gravis Foundation of America’s annual conference this year, Kathryn Rodriguez (pictured above with her husband Alexis) led some incredible breakout sessions for the caregivers/loved ones of those…
The Hemophilia Alliance of Maine recently co-sponsored a special event with Shire Pharmaceuticals for grandparents to join together for inspiration. The event was held on April 22nd in Maine. I…
Any parent watching their child have an epileptic seizure can tell you that even the shortest seizure seems to last forever. In the case of a seizure that goes on for…
About four years ago, Sagar Baheti found out he had an eye condition called Stargardt disease. Initially, he was not alarmed by the small symptoms that indicated Stargardt. He did…
Is Mother Nature trying to tell us something? Are the three evil trinity viruses/diseases like Ebola, Zika, and now Lyme disease, simply “Her” way of depopulating her over-crowded planet? Okay.…
June is hectic, with all those weddings and graduations. July is loud—firecrackers, political conventions, family reunions—and the humidity is stifling. But August, dear sweet lovely August? It might just be…
The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) submitted a letter to Congressional leaders Friday - undersigned by over 120 patient advocacy organizations - urging…
We’ve all heard the expression, “Beauty is in the eye of the beholder.” How about another cliché? “One man’s trash is another man’s treasure.” These trite statements do, in fact,…
Two years ago, Lucas wouldn't go anywhere near water. Last month, he tackled a swimming challenge, and he did so in support of a cause that's close to home. Lucas…
Just a few days after her wedding, when most people are on their honeymoon, Morgan Alamo was told that she may have cancer. Who would have thought that the wedding…
There are four million people in the United States walking around with Sjogren’s disease, and nine out of 10 of them are women. This autoimmune disease affects the entire body…
Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…
A warning has been issued by the HSE in Great Britain about the dangers of Lyme disease, a warning that Americans should follow, too. The HSE is urging Brits to…
Friday was an incredibly important day. Yes, it was Cinco De Mayo, but it was also the first time the FDA has approved a treatment for ALS (Lou Gehrig’s Disease) in…
If you're one of the extra rare people with Primary Biliary Cholangitis and a thyroid disease, this new research might put a smile on your face! But let's make sure we're all on…
To put it lightly, the phrase “fight like a girl” isn’t exactly music to my ears. But when women take ownership of the saying, re-claim it in a way, that’s…
Has anyone ever called you one in a million? You took it as a compliment, no doubt. Maybe you saw this as someone saying that you’re special, you’re unique, you’re…
Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…
The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body. These are…
Life is a balancing act. We need to balance our responsibilities with our desires. We need to balance work lives with personal lives. Our balancing acts aren’t as dire as…
Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…
When people think of the monumental achievements of science, most think of landing a man on the moon and bringing him home again. That is an impressive feat. However, science…
There are few things more frightening and horrifying for a new parent than being told that their child has a lifelong medical disorder. Perhaps the only words that could make…
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