Posts Tagged ‘EDNF Conference’

Ehlers-Danlos Syndrome (Vascular Eds): Things you should know!

Posted on November 29, 2021

Vascular Ehlers-Danlos condition is an inherited connective tissue problem that is brought about by deficiencies in a protein called collagen. It is viewed as the most extreme type of Ehlers-Danlos disorder (EDS). Common symptoms incorporate thin, transparent skin; bruising; specified facial appearance; and fragile arteries, muscles, and inside organs. Vascular EDS is generally caused by […]

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The Directory for EDS Support Groups

Posted on July 12, 2014

Watch the video tour of the site in 2012: celebrated its 2nd year anniversary in July 2014 by sponsoring a booth at the EDNF Learning Conference in Houston TX.   We have come a long way in just two short years!   This video shows the launching of at the 2012 Cincinnati EDNF Learning Conference! We welcome Comments […]

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EDS Awareness Booth at the 2013 EDNF Conference

Posted on May 11, 2013

Don’t miss the 2013 EDNF Conference in Providence, RI. will be a sponsor again this year.  Stop by our booth to learn more about our free support group program! Here is a summary of the 2012 conference experience: Attendees witnessed several exciting announcements at the 2012 EDS learning conference! It was announced that the […]

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EDS Support Group Directory in Development at

Posted on August 22, 2012 launched its new online resource at the EDNF Learning Conference last week in Cincinnati, Ohio. “We had an overwhelming response”, says John Ferman, Founder. “My wife passed away in 2008 – never knowing EDS was the cause of 30 years of chronic pain.  This was the same year my daughter was diagnosed with […]

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Em Made it to the Conference!

Posted on August 21, 2012

We wrote about Em before the EDNF Learning Conference in Cincinnati, Ohio. She is a very brave young lady. Her mother tells us how she is doing. “But, my kid is pretty amazing. Growing up is challenging under the best of circumstances – adding to that mix complicates things exponentially. Em has had a rough […]

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EDNF announces plans for EDS Registry, Research & Clinical Care Center

Posted on August 9, 2012

The EDNF announced that it will be forming an international research registry! We will be asked to  donate blood and/or tissue samples to help in the effort. In addition, plans are underway to found an EDNF Clinical Care and Research Center! The location of the proposed center has not been determined; several institutions are being considered. […]

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EM didn’t miss the EDNF Learning Conference!

Posted on August 1, 2012

The EDNF Learning Conference in Cincinnati, Ohio will be a rewarding experience for all who can attend. Even if traveling is a challenge, it is definitely worth it.  This EDS family anticipates going to the conference, and shares their perspective in a personal blog. “Been awhile since I posted, so I thought I would do a […]

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