Archive for the ‘Community’ Category

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Educational Advocacy and Accommodations for Ehlers Danlos Students

Posted on December 23, 2014

Students with medical conditions, such as Ehlers-Danlos Syndrome (EDS), should have equal educational opportunities in all countries. Unfortunately, that isn’t the reality – according to Amy King, an EDS student and advocate for adult education in the UK. Many adults living with Ehlers Danlos Syndrome (EDS) are highly intelligent, motivated and hard-working individuals looking for the opportunity to learn and contribute to their […]

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8 Year Old Forest Ranger with Ehlers Danlos Syndrome on TV

Posted on December 15, 2014

Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and effects the skin and blood vessels. But when the Make-A-Wish Foundation […]

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Nicola Gets Help From Fiance for Her Hypermobility Syndrome

Posted on December 13, 2014

Nicola’s story brings awareness to how difficult life can be with hypermobile joints.  She is fortunate to have a the help of a supportive fiance and a mother who is a retired nurse. By PETER HENN. Nicola Lynch, of Rainham, Kent, has dislocated her shoulders 80 times and her thumbs 25 times each in the six years since […]

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UK Woman Spreads Awareness of Ehlers-Danlos Syndrome

Posted on December 6, 2014

Ruth Baker is telling her story to increase EDS Awareness in the UK.  She shares our passion – helping even one person makes it all worthwhile. Ruth says, “It can be a lonely place when you’re suffering from something that is so rare that even doctors don’t know what you’re talking about.” Doctors need to understand that EDS is perceived as a rare disorder only because […]

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#GivingTuesday brings people together to support Ehlers-Danlos organizations

Posted on December 2, 2014

Please join us this Tuesday, December 2 in our support of all EDS organizations, including the EDNF.  ****** #GivingTuesday brings people together in a seasonal call to action of generosity and service in the midst of holiday shopping. Last year over 10,000 organizations in 46 countries united for #GivingTuesday. With your help this year will be […]

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Firefighters in UK Raise Money for Ehlers Danlos Syndrome

Posted on November 28, 2014

Five-year-old Annabelle Griffin inspired local firefighters to perform physical feats — raising money and Ehlers Danlos Syndrome awareness in the UK. Annabelle has VEDS. FIREFIGHTERS pushed themselves to the limit scaling the UK’s three highest peaks and cycling 500 miles to raise a staggering £15,000 for charity. The group of eight men from Oldham Fire Station […]

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EDS Awareness Educational Series – Recording Available

Posted on September 17, 2014

Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many EDSers are misdiagnosed with psychiatric conditions before their Ehlers-Danlos, Dysautonomia or associated physical conditions are identified. Dr. Barnum addresses what can happen in extreme […]

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