The FDA has approved a new narcolepsy and cataplexy treatment for pediatric patients! Xyrem is a drug used to control narcolepsy symptoms including cataplexy and excessive daytime sleepiness (EDS). It…
When a lot of people think of physical therapy, they think of rehabilitation to improve an injury or some type of ailment. However, the world of physiatry is much broader…
It's shocking and quite frankly, devastating, to be diagnosed with any type of cancer at any age. It can be hard to stay positive as your life completely changes as…
Any research that's done with rare disease patients in mind, working to improve their treatment and experience is wonderful. However, when collaboration between both researchers and organizations working to support…
CNS-PNET brain cancers are typically diagnosed by type according to their specific location in the brain as well as how they appear underneath a microscope. However, its recently become clear…
Growing up without a diagnosis is hard. In a world which frequents new scientific discoveries, you're still living as a medical mystery. When no one knows the answer, patients often…
For esophageal cancer (like many rare conditions), early diagnosis means a better prognosis. Unfortunately, until now there haven't been many ways to determine whether or not an individual may be at…
An innovative new treatment means practically nothing if we can't determine the type of patient it's going to be effective for. For an illness like acute myeloid leukemia (AML), which is…
NSCLC Non-small cell lung cancer or NSCLC is the most common kind of lung cancer diagnosis. It affects over 2 million people and of those, there's a small group who…
The problem Synapses in the brain are the connections between neurons that allow them to communicate with one another. In a healthy brain at least, that's how chemical signals are successfully…
Patients as Partners When you're diagnosed with an illness such as metastatic breast cancer, pancreatic cancer, or another rare disease that has limited treatment options, it's very easy to lose…
For some fortunate individuals, cancer is kind of a foreign concept. They obviously know what it is- they hear cancer stories in passing, they may have donated to a charity…
Across the globe, countries are transitioning their healthcare systems to provide more care within the patient's home and less in a hospital setting. Why? Simply put, it's because there's beginning…
Multiple sclerosis is a disease that can effect every aspect of daily life. However, symptoms vary on a day to day basis and the lack of predictability makes the disease…
Of pediatric cancers, brain cancer has the highest rate of mortality and medulloblastoma is the most common of brain cancer diagnoses in children. It's a brain cancer that originates in…
When you’re first diagnosed with something like breast cancer, ovarian cancer or another rare condition there’s a million things racing through your mind and a million and one things to…
"Five to 10 percent of all cancer is hereditary" - Adelsperger Genetic counselors can help you understand not only your own risk for developing cancer but the risk of your…
What is PML? PML stands for progressive multifocal leukoencephalopathy. It’s a brain infection caused by the JC virus. The JC virus itself isn’t all that rare. In fact, its pretty…
In order to improve the lives of patients for any illness, we all know research is an essential step. We also know that the most accurate research is derived from…
A recent study conducted by PLOS Biology has revealed the importance of Active-DHA in the brain, particularly as it is still developing. This could mean big things in terms of…
Lisa Clayton has been diagnosed with cancer as many times as she's given birth. She's a mom of 5, and she has just heard the news "you have cancer" for…
LiPlaCis is a formulation of cisplatin that delivers its agent directly to cancerous tumor sites. Its efficacy has so far only been studied within breast cancer patients. However, scientists have reason to…
A diagnosis of Cri du Chat (or 5P-), used to mean institutionalization. The name is french meaning "cry of a cat" which comes from the distinct sound children with the illness…
How it all started Joy Milne is a retired nurse who helped diagnose her husband with Parkinson's disease. 12 years before the official diagnosis, Joy noticed a change in her…
A past, current, and future problem – underrepresentation in clinical trials, particularly for rare diseases. Why does representation matter? Besides, you know, the basics of equality, drugs can react differently…
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