Editor’s Choice: Exciting New Tools and Devices to Help Rare Disease
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…
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.…
These days there is an app for everything. There's an app for how to cook a nice meal. An app to remind you to meditate. Countless apps for finding your…
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…
If you’re lucky enough to find a job that you’re passionate about, it’s easy to see “work” as anything but. Still, love your job or not, it’s important to know…
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…
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.…
Life was so much simpler when we were kids. We didn’t have to worry about bills, or how what we say could accidentally offend someone else. Heck, even the stories…
According to the Rare Disease Report, 50 years ago, when Tommy Hoag was six years old, he received a kidney transplant. Tommy needed this transplant after having Scarlet fever and…
If you passed me as a stranger on the street, you would never guess that there was a point in time that I road tripped around the U.S. and picked…
Psoriasis is often labelled as “disgusting” or “contagious,” causing people who are afflicted by this disease to feel embarrassed and hide their skin from the rest of the world. But…
For a while, researchers and scientists have known that the protein, TDP-43, is found in clumps in the brain cells of patients with amyotrophic lateral sclerosis (ALS). It has also…
Being pregnant can cause some wonky things to happen to your body. Some go without saying—weight gain, strange cravings (jalapeño peppers on popcorn), fatigue (tbh, you’re carrying around another human…
Crinetics Pharmaceuticals, Inc. is a pharmaceutical/therapeutics company that focuses on rare endocrine-related disorders and cancers. This past month, excitingly, the pharmaceutical company announced that it had been awarded a Phase IIB…
Most people know the dangers of high blood pressure, high cholesterol, and high blood-sugar. But most people don’t think about high potassium as a problem. Unfortunately, high levels of potassium…
Our partner, The MDS Foundation, is hosting another wonderful event for patients and caregivers. The event is completely free, just don't forget to register! When: Saturday, September 9th, 2017 Where:…
Cancer has a pretty complicated history with statins, a class of drugs that are most commonly used to lower blood cholesterol levels. In the past, laboratory tests involving statins have…
In 1998, The Mighty first brought the rare disease community into the spotlight, followed by Extraordinary Measures in 2010. Now, seven years later, The Big Sick is doing it again…