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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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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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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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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