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…
.png)
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…
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…
According to a story by MarketScreener, pharmaceutical company Acer Therapeutics Inc. has submitted a New Drug Application (NDA) for its vascular Ehlers-Danlos syndrome (vEDS) drug Edsivo. The NDA was granted…
Patients living with any of the Ehlers-Danlos syndromes (EDS) might be tempted to one day visit a chiropractor. The implications of the condition might also make make them equally hesitant…
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…
Facebook has been making changes to how content will be shared on people’s newsfeeds. These are designed to help users connect more with friends and family, and limit the number…
Hannah Evans, a 27-year-old woman from South Wales with several rare diseases, has reached her £37,500 fundraising goal that will support her trip to America to access an experimental and…
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…
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…
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
According to a story from CTV News, Triss Hunter is a junior at Ecole Mission Senior Secondary School in the Fraser Valley. This year, she is not being permitted to…
The hashtag #hotpersoninawheelchair went viral after the Youtuber and activist Annie Segarra used it as a response to an offensive tweet by Ken Jennings, reports The Guardian. Jennings, best known…
No matter which way you spin it, Ehlers-Danlos syndrome (EDS) is generally not a great time. EDS is a rare genetic condition that affects connective tissue throughout the body. It…
As most people with invisible illnesses know, it's hard to explain certain behaviors to people when you don't "look sick." There's an endless list of symptoms that need to be…
I lived with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder, my whole life and had no idea until I was 21. The symptoms were all so random, separate, and…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
