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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Patients with Ehlers-Danlos Syndrome are Leading the Research on the Rare Disease
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Patients with Ehlers-Danlos Syndrome are Leading the Research on the Rare Disease

An article recently highlighted the stories of young patients with Ehlers-Danlos syndrome and how they are taking their diagnoses to spearhead research about the rare disease. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos…

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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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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?
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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?

According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…

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Ankylosing Spondylitis has Taken Her Mobility, and She Fears Her Daughter is Next
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Ankylosing Spondylitis has Taken Her Mobility, and She Fears Her Daughter is Next

For Emma, the worst part of receiving her diagnosis with ankylosing spondylitis wasn't adapting to the constant pain, losing her breath over five minutes of standing, being too exhausted to…

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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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