Correlation Between Marfan Syndrome and Pregnancy Related Arterial Dissections
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Correlation Between Marfan Syndrome and Pregnancy Related Arterial Dissections

Arterial Dissection Arterial dissections refer to the tearing of the inner wall of an artery. Pregnancy creates stress on the body's blood vessels and in rare cases dissections can occur.…

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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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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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“If You’ve Grown Up With Your Disease From Day One, You Never Know What It’s Like to be Healthy.” Patient Stories in the #IAmNumber17 Campaign

As originally reported in PR Week; pharma company Takeda has been joined a plethora of rare patients groups to create the 'I am Number 17 ' campaign which features 17…

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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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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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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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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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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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