Is There Enough Education on Ehlers-Danlos Syndrome?
Hypermobility is not just a parlor-trick. For people with EDS

Is There Enough Education on Ehlers-Danlos Syndrome?

In Prohealth, Marlane Quade Cook draws on her own experience with Ehlers-Danlos syndrome to question whether the medical community has enough information and education to properly diagnose all 13 subtypes…

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Meet Carina Imbrogno, a Rare Artist Living with Ehlers-Danlos Syndrome
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Meet Carina Imbrogno, a Rare Artist Living with Ehlers-Danlos Syndrome

I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos syndrome kyphoscoliosis type, but it was not diagnosed…

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Man with Rare Disease Organizes Musical Ensemble with Other Chronic Disease Patients 

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…

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Study to Investigate the Development of Lung Disease in Connective Tissue Disorders
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Study to Investigate the Development of Lung Disease in Connective Tissue Disorders

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…

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GoFundMe for Sara Geurts, Model with Ehlers-Danlos Bedridden After New Diagnosis
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GoFundMe for Sara Geurts, Model with Ehlers-Danlos Bedridden After New Diagnosis

According to a publication from People, Sara Geurts, a 28-year-old model with Ehlers-Danlos syndrome, has been bedridden for several weeks due to complications linked to her condition. Geurts, a Minneapolis…

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Vascular Ehlers-Danlos Syndrome Patient Data Released Following Study

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…

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Drag Queen on RuPaul’s Drag Race Television Show Talks About Ehlers-Danlos Syndrome 

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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International Genetic Research Group to Begin Study of Hypermobile Ehlers-Danlos Syndrome (hEDS)

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…

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ICYMI: FDA Clears New Drug Application and Grants Priority Review for Potential Ehlers-Danlos Syndrome Drug
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ICYMI: FDA Clears New Drug Application and Grants Priority Review for Potential Ehlers-Danlos Syndrome Drug

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…

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Marfan and Ehlers-Danlos Patients May Want to Avoid This Class of Antibiotics
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Marfan and Ehlers-Danlos Patients May Want to Avoid This Class of Antibiotics

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…

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FDA Accepts New Drug Application for Vascular Ehlers-Danlos Drug
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FDA Accepts New Drug Application for Vascular Ehlers-Danlos Drug

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…

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A New Drug Application Has Been Submitted For a Potential Vascular Ehlers-Danlos Syndrome Treatment

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…

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How Changes to Facebook’s Algorithm Might be Affecting Fundraising and Awareness Pages

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…

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Meet Hannah: a 27-Year-Old with EDS, POTS, MCAS, and Blood Cancer Fundraising for Treatment in the USA

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…

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Raising a Son While Managing POTS, EDS, and Gastroparesis: Lindsay’s Story
Photo courtesy of Lindsay Fogarty

Raising a Son While Managing POTS, EDS, and Gastroparesis: Lindsay’s Story

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…

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“We don’t want to be invisible anymore”: EDS Stories Shared at the #ZebraStrong Rally
Photo courtesy of the Ehlers-Danlos Society

“We don’t want to be invisible anymore”: EDS Stories Shared at the #ZebraStrong Rally

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…

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