Archive for the ‘Awareness’ Category

Rare Disease Day – February 28, 2013

Posted on February 14, 2013

“In the U.S., any disease affecting fewer than 200,000 people is considered rare….There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.” (from rarediseaseday.us) We know that many of those “one in ten Americans” are reading this email right now. Rare […]

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Welsh Government is Starting to Pay for EDS Treatment

Posted on January 6, 2013

It has been difficult in many countries, including the US, to get insurance and government agencies to pay for Ehlers-Danlos Syndrome treatment. Many doctors do not understand this disorder and most do not know how to treat this condition. This is a story of a successful result of a public appeal for a teenager with this rare […]

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Canadian Teen Seeks EDS Treatment in the US

Posted on January 2, 2013

Brittanay is another Canadian who is not getting the treatment she needs for her Ehlers-Danlos Syndrome.  She is seeking more treatment in the US. “Brittany Crichton looks battered. Bruises dot the 23-year-old Hamilton woman’s body. She has a pronounced limp. Her shoulders dislocate so often that she puts them back in herself. Clumps of her hair have […]

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First International Symposium on Ehlers-Danlos Syndrome

Posted on May 21, 2012

This International symposium will focus on current progress and controversies in diagnosis, treatment and pathogenesis of Ehlers-Danlos syndrome. Experts will present the latest developments in the field, both of the clinical and molecular level.

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