Imagine this: two elementary students are in the restroom at school, smoking a bowl. And then, the principal walks in. Rather than flying off the handle, the principal smiles and…
If you have pulmonary arterial hypertension (PAH), you know it's a rare form of high blood pressure. It affects the arteries that run from the heart through the lungs, causing those…
Tuberous sclerosis complex (TSC) is a rare genetic disease. It causes tissue to form abnormally in patients at a young age. Different organs are affected by it, meaning that symptoms…
What is carcinoid syndrome? This syndrome is caused by tumors that grow in the mucosa of the gastrointestinal tract. It occurs in people who have carcinoid tumors, although not all go…
“Knowledge is Hope” is the motto of the Mesothelioma Applied Research Foundation and it could not be more true. While mesothelioma can be a terrifying diagnosis, researchers have made great…
You’ve heard the expression, “What’s in a name?” How about, “What’s in a number?” September 7 is World Duchenne Awareness Day. It occurs on that day every year because the 7th…
Anyone can tell you that life sometimes wears us down. With so much to do and too little time, we sometimes find ourselves running on inadequate sleep and Starbucks lattes.…
With fishing and summer recreation seasons just around the corner, you could be exposing yourself to Lyme disease and not even know it. You might become just like one mother…
Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time. Additionally, it’s a spectrum condition so…
Glanzmann's thrombasthenia (GT) is an inherited autosomal disorder that begins at birth. It causes prolonged or spontaneous bleeding and affects one out of one million people. Patients tend to bruise easily and…
Few things are scarier in life than dealing with a sick child. But for some parents, that fear is compounded into a living nightmare when they are told their child…
The scenario is much more common today than in years past. A patient who doesn't abuse alcohol or have chronic hepatitis is admitted to the hospital, many times the ICU,…
Want some more news, events and announcements on Sickle Cell? We got 'em! [one_half] [/one_half] [one_half_last] Brazilian Researchers Propose Classification of 3rd Sickle Cell Subtype SAFE Treatment for…
Happy Memorial Day Weekend Patient Worthians! This week we have an inspiring interview with the CEO and Founder of the Hereditary Neuropathy Foundation. We also have a motivating story on a cheerleader battling Friedreich's…
I’m a big fan of questions. All my life, I’ve asked questions and looked for the answers. Sometimes I’ve found them, and sometimes not. What I now realize, after many…
Want some more news, events and announcements on SCID? We got 'em! [one_half] [/one_half] [one_half_last] The Expense of Scientific Progress: The Price of Gene Therapy for SCID The…
Here’s some important information that everyone considering having children should know because they could potentially pass primary carnitine deficiency (PCD) on to their children. PCD, also known as carnitine transport…
Homocystinuria is an extremely rare disorder. It is estimated that only 1 in 344,000 people in the world have it. Homocystinuria is a genetically inherited. This means the child’s parents…
Children need exercise. Not only for the health benefits but for the social benefits too. Playing games like hide-and-go-seek and tag, and participating in community sports like soccer and swimming,…
Shortly after celebrating baby Eli’s birth, his family got the shocking news that Eli had a fatal disease called spinal muscular atrophy (SMA). Spinal muscular atrophy can take away Eli’s…
Earlier this week, you may not have seen our reporting on the latest move by China for the rare community. So in case you missed it... With the largest population…
According to recent research, the Nigerian federal government believes nutrition is another way to approach treating and potentially curing Sickle Cell Anemia. Dr. Ogbonnaya Onu, Minister of Science and Technology, explained…
This year, there were about 5,000 runners in the Myrtle Beach Marathon. Trigeminal neuralgia (TN) didn't stop Greenville, North Carolina’s Melvin Coleman from being among those who ran relay races,…
Want some more news, events and announcements on Beta Thalassemia? We got 'em! [one_half] [/one_half] [one_half_last] Atherosclerwhat? Pay Attention to Your Arteries if You Have Thalassemia Iron Supplements…
Ovarian cancer is the most deadly form of reproductive organ cancers. Why? Because it's usually not diagnosed until it has reached the late stages because the symptoms are often overlooked,…
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