As COVID-19 continues to spread, the rush for a treatment or cure continues. Today, on August 4, there are 18.2 million diagnosed cases worldwide, with an associated 692,000 deaths.…
Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…
Education, research, support, and patient advocacy: these are just four of the amazing things that rare disease or disorder foundations offer. Many foundations seek to offer programs and resources to…
A recent report has documented a positive case study of a potential treatment option for one of the complications Marfan syndrome can cause. This report was published in the Journal of Oral Implantology. …
A study record from clinicaltrials.gov is investigating the appearance of lung problems in patients with disorders affecting connective tissue. While prior research has documented the appearance of interstitial lung disease…
According to a story from WebMD, the US Food and Drug Administration recently issued a warning about a class of antibiotic drugs called fluoroquinolones. They have been linked to an…
Isaiah Austin is a name many sports fans may be unfamiliar with. In 2014 that may have been a different story. Austin played basketball at Baylor. Standing 7’1”, with surprising…
According to a story from Healio, a recent study found that irbesartan, marketed under the name Avapro, can help reduce the rate at which the aorta, the largest blood vessel…
According to a story from Medpage Today, a recent study found that the drug Avapro, which is commonly used to treat high blood pressure, could also slow down the dilation…
According to a story from the Tampa Bay Times, Dr. Murray Shames, who works at the Tampa General Hospital, has been finding success using a new device to treatment dangerous…
The birth of a child can be one of the defining moments for a couple. It’s a milestone of that brings with it a series of surprises and lifestyle changes…
Researchers at Columbia University have found a way to apply CRISPR, a tool used in gene therapies, to new types of disease, reports News Medical. The study was carried out…
According to a story from PR Newswire, The Marfan Foundation and Backpack Health are partnering so that the foundation can begin the creation of a patient registry for people affected…
Residents think of the Central Florida healthcare system as predictable. It maintains a conservative approach to practices. That was until recently, when the industry invited local video game developers to…
According to the New York Post, 16-year-old Brandon Marshall from the UK stands tall at a whopping 7' 4", possibly making him the tallest teen currently in the world. His…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
Every single day is life-threatening for Lauren Stribling, a 15-year-old girl suffering from a rare genetic disease called Marfan syndrome, reported Daily Mail. A simple fall, push, or physical aggression…
A new study may lead to new cures and treatments for Marfan syndrome. Researchers at Johns Hopkins have made great progress testing in mice. Follow the original story here. On…
If you have a rare disease, chances are, sometimes you feel all alone in your experience. When you look around, there are people all over the world fighting similar battles.…
Some people with Marfan syndrome look the part. They may be unusually flexible, with long arms, legs, and fingers, and a tall, willowy build. Some patients have scoliosis, crowded teeth,…
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