According to a story from news.yale.edu, Yale alum Jordan Plotner began experiencing his first symptoms of Ehlers-Danlos syndrome when he was a sophmore. He experienced episodes of brain fog and…
Talk about a bittersweet symphony! Published on Yale University's online paper, recent grad Jordan Plotner -- who is living with Ehlers-Danlos syndrome (EDS) -- organized a virtual musical ensemble with other…
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…
IPain The International Pain Foundation (IPain) is a nonprofit organization dedicated to supporting those with chronic pain due to neurological, musculoskeletal, inflammatory, degenerative, and emotional conditions. They aim to improve…
According to a story from globenewswire.com, the pharmaceutical company Acer Therapeutics recently announced the release of data from a long-term observational study of patients with vascular Ehlers-Danlos syndrome (vEDS). All…
Any fans of RuPaul Drag Race or the art of drag itself? Raise your manicured hand! Well, regardless of your answer - watch how the world of drag and rare…
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A recent announcement by the Ehlers-Danlos Society marks the beginning of the recruitment phase for an international study devoted to determining the root cause of hEDS. The gathering of this…
In November of 2018, England announced that cannabis could be prescribed for medicinal use by specialist physicians when no other treatments proved effective. It's prescription was purely to be decided…
Ehlers-Danlos Syndrome Ehlers-Danlos syndrome (EDS) refers to a group of rare disorders which affect the connective tissues in the blood vessels, bones, skin, and other organs in the body. It's caused…
According to a story from BioPortfolio, the pharmaceutical company Acer Therapeutics, Inc., recently announced the company's New Drug Application (NDA) has been accepted by the US Food and Drug Administration…
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…
Learning Conference Australia This conference will combine educational sessions geared both towards health professional and Ehlers-Danlos syndrome patients. The event will also be an opportunity for the patient community to…
Learning Conference Australia This conference will combine educational sessions geared both towards health professional and Ehlers-Danlos syndrome patients. The event will also be an opportunity for the patient community to…
While I write about rare and neglected disorders all the time, very few people in my life actually know about my own experience. I have hypermobile Ehlers-Danlos syndrome (EDS), a…
Acer Therapeutics has submitted a New Drug Application to the United States Food and Drug Administration on behalf of Edsivo™, their experimental treatment for vascular Ehlers-Danlos syndrome. To find out…
My name is Lindsay Fogarty. I am a 25-year-old single mother to a wonderful 6, almost 7-year-old son, named Andrew. As I am writing this I am listening to the…
The International Symposium on the Ehlers-Danlos Syndromes “Interaction and signaling: recurrent themes in the molecular mechanisms of EDS.” This event will allow scientists and clinicians to come together to discuss…
I know that it's been months since Kylie Jenner tweeted that Snapchat was over, and the company stock dropped like a billion dollars over night, but if you, like me,…
On August 4th, the Ehlers-Danlos Society led the Zebra Strong Rally, which concluded the third day of the Ehlers-Danlos Syndrome Learning Conference in Baltimore, Maryland. Advocating for Ehlers-Danlos Syndrome The…
I came into the hospital about four days ago at 6 am in extreme abdominal pain. I remember writhing on the emergency room bed and breathing so frantically that my…
Recently, the Ehlers-Danlos Society held its second annual Zebra Ball at the EDS World Learning Conference in Baltimore, Maryland. The event fundraised for further support and awareness of Ehlers-Danlos syndrome…
Ehlers-Danlos syndromes (EDS) are a group of rare conditions that affect the connective tissue and can be inherited. Connective tissue lies between tissues and organs throughout the body and helps…
I'll start this article, like many others, by mentioning that although I'm convinced I know everything about everything because I minored in biology in college, I'm really not a doctor.…
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…
This morning, I was on an elliptical before work, reflecting on the life-long journey I've been on with exercise and Ehlers-Danlos syndrome. I hated PE class as a kid. I…
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