ICYMI: EDSIVO for vEDS Earns Breakthrough Therapy Designation
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ICYMI: EDSIVO for vEDS Earns Breakthrough Therapy Designation

In the United States, the FDA grants Breakthrough Therapy designation to drugs intended to treat serious and life-threatening illnesses, and/or drugs which show significant improvement over available therapies. After receiving…

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Have You Ever Been Denied a Diagnosis And Told That Your Pain is Psychosomatic? Part Two

Note: This is part two of a two part story. Don't forget to go back and read part one! Meghan O’Rouke, the author of the NYT best-selling book Invisible Kingdom,…

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How Lina Williamson Works to Empower the Ehlers-Danlos Syndrome Community
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How Lina Williamson Works to Empower the Ehlers-Danlos Syndrome Community

“The patient network is incredibly important,” Lina Williamson, PhD, explained to me. You see, in her childhood, Lina experienced a number of seemingly unexplainable symptoms: severe and sometimes debilitating leg…

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A Shared Rare Condition and a Shared Dream: How Ehlers-Danlos Syndrome Connected Miss America and Ms. Wheelchair Virginia
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A Shared Rare Condition and a Shared Dream: How Ehlers-Danlos Syndrome Connected Miss America and Ms. Wheelchair Virginia

Ryan Kress was crowned Ms. Wheelchair Virginia 2020 and Camille Schrier was crowned Miss America 2020. Besides their titles, what brings these two individuals together is their medical diagnosis with…

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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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Scholarships are Available for the 2019 International Pain Summit Which Will be Held in LA this November

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…

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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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