There is no way to prepare yourself to hear that your child has an incurable rare disease. After the initial shock of learning that their child will most likely die…
Bethany Barber is a Virginia native living with sickle cell anemia who has dreams of making it big as a model. She goes on daily castings, as modeling is her main…
Some people can manage tuberous sclerosis complex (TSC) with their doctors for years using a watch-and-wait approach until the last and best option—surgery—becomes necessity. By using the watch-and-wait method, a…
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…
I was discussing with my sister’s husband a presentation on what to do when diagnosed with a chronic illness. I was going to present this to People with Parkinson’s (PwP),…
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…
A study published in April has found a link between neurological birth defects in infants and several neurodegenerative diseases, which may help understanding and treating diseases such as Alzheimer's, Parkinson's…
On Saturday, April 29, 2017, a special event took place to honor women in the hemophilia community living in Idaho. Way to go, Idaho Chapter of the National Hemophilia Foundation! How…
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…
More than 35,000 Americans suffer from Huntington's disease (HD), a neurodegenerative disease. Eventually, HD destroys a person's ability to walk, talk, swallow, or have meaningful relationships with friends and family. Chorea is…
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…
As a registered nurse, I have taken care of a fair share of the senior population. I have heard some great stories and also some funny quotes. Several older individuals…
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…
Who doesn’t like a good comeback story? Especially when it's about POTS? There are far, far, far too many challenges in life that can make a person come undone. From…
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…
"I have chronic Lyme Disease and it's chronic because it took so long to get it treated." William and Mary student Alexis Plofchan is the subject of a seven-minute documentary directed by…
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