There’s a lot happening in the adrenoleukodystrophy (ALD) world, so here’s the latest scoop. Adrenoleukodystrophy, or ALD for short, is a genetic rare disease that destroys the protective sheath surrounding…
In late July of this year, the results from a scientific preclinical trial were published in which a research team in Europe discovered initial signs that could pave the way…
Klippel-Feil Syndrome Awareness Day began five years ago, when a small group of people decided a specific day each year should be set aside, to help the KFS community speak…
As a research geek who has researched and written dozens of articles about Parkinson's disease (PD), let me assure you there is a lot of bad information out there. But there…
What do you think of when you hear the word “family?” You may consider your parents, siblings, grandparents, aunts, and uncles. No matter whom you include, we all share one…
They say that technology has made life easier, faster, more comfortable, and on and on and on. Who this “they” is, I don’t know. While technology has made certain parts…
The process of getting a treatment approved by the FDA is long and involved. Needless to say, the process is so complicated to protect us, the people who will be…
There is nothing worse than a summer cold. I should know. I am the proud owner of a bonafide summer cold complete with a runny nose, sore throat, coughing fits,…
Recently, the U.S. FDA has deemed a particular idiopathic pulmonary fibrosis (IPF) drug "orphan drug status" worthy. Last week, on July 25, 2017, it was reported that the FDA granted…
Let’s talk clinical trials. Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat…
Welcome Back to Editor's Choice! The end of the week is finally here, and we have some reading material for you. First, we have an awesome story of a CF…
Comic Demetri Martin likes to point out that worms and bears don’t have much in common until you think about gummy. Then, the similarities become clear. What Martin is pointing…
Friendships may come and go, but you’re stuck with your sibling. This relationship is oftentimes one of the longest relationships in a person’s life. Our siblings are our family tree.…
Those who have received the diagnosis of trigeminal neuralgia can experience sudden pain in the jaw, cheeks, and forehead. This pain can last seconds to a few minutes. Some people with…
Despite a politician’s recent explanation of supply and demand by saying, “If you put the supply out there, the demand will follow,” that is not how the economic principle works.…
We’ve all played hooky once or twice, right? Even your parents have played hooky before. That’s why they were so skeptical of you when you were doing it. But Michelle…
The United States' Orphan Drug Act (ODA) was enacted in 1983. Years later, it has failed to fuel the creation of orphan drugs to treat rare diseases, including spinal muscular…
Scientists may have discovered something crucial for the future of Parkinson's research. They found a new way to observe changes in the brain from Parkinson's disease. Specifically, research suggests that…
A report titled, “Association of Sarcoidosis With Increased Risk of VTE: A Population-Based Study, 1976 to 2013,” recently released information that patients with sarcoidosis have a 3-fold increased risk for…
Most kids don’t like to share. The occasional hand-me-downs? Sure. For me, my books, games, and beloved Dale Earnhardt hair bows were sacred property—mine, mine, mine. I chose not to…
Mermaids have unique breathing concerns while they’re on land. In Disney’s “The Little Mermaid,” a young mermaid princess trades her voice for an opportunity to live on the land and…
When my son was born he didn't exhibit primary immunodeficiency (PI) or any of the other conditions on the newborn screening panel. Still, I fretted over just about everything. He…
I’ve dealt with the medical community in a number of ways throughout my life, from my first clerical job in a hospital, to numerous positions in hospitals in different states.…
Don't miss out on two days worth of presentations, roundtable discussions, live and silent auctions, networking and more with the ALD community! Learn about the latest ALD news and get…
Come out to this live PBC event to learn, hear, and empower yourself on the latest PBC news and information Get the chance to listen to nurse educator, Jennifer Blood…
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