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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Coronavirus: Could Medical Rationing Put the Chronically Ill/Disabled in Danger?
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Coronavirus: Could Medical Rationing Put the Chronically Ill/Disabled in Danger?

In a story written for The Washington Post, Jessica Slice writes about a frightful predicament for patients with chronic illnesses that cause disability. Jessica lives with dysautonomia and hypermobile Ehlers-Danlos…

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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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Lena Dunham is Candid and Playful Revealing Her Struggles With Ehlers-Danlos Syndrome
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Lena Dunham is Candid and Playful Revealing Her Struggles With Ehlers-Danlos Syndrome

Recently, different celebrities have been making their chronic conditions public via social media. Lena Dunham was motivated for a similar reason to Billie Eilish, who revealed she has Tourette syndrome,…

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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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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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Good News for Ehlers Danlos Syndrome Patients: First Ever Cannabis Clinic Opened in the UK

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…

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Teddy Bears with Feeding Tubes help Children with Ehlers-Danlos Syndrome Adjust

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…

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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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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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The Ehlers-Danlos Society’s International Symposium on the Ehlers-Danlos Syndromes

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…

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