Archive for the ‘Rare Disease Day’ Category

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CN Tower Will Have Blue Lights to Commemorate Rare Disease Day

Posted on February 27, 2015

This Saturday (2/28) Ehlers-Danlos Syndrome Canada will commemorate Rare Disease Day with the lighting of the CN Tower in blue at sundown. EDS is considered to be a rare disease; but experts say it is more prevalent than once thought – because it’s rarely diagnosed!  To learn more about prevalence, watch Dr. Neilson’s video here. By Lisa Rainford of Bloor […]

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Rare Disease Month Artwork Includes Ehlers-Danlos

Posted on February 25, 2015

Rare Disease Month brings out the images of those who are struggling with the challenges of Ehlers-Danlos Syndrome and other debilitating disorders. “Beyond the Diagnosis” is an art exhibit that features a piece depicting an EDSer and her caregiver. By Jacyln Torres Contributing Writer “Beyond the Diagnosis,” hosted for Rare Disease Month, aims to humanize portrayed […]

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Rare Diseases: “Navigating Insurance Issues” Webinar

Posted on April 27, 2014

This looks like a very helpful webinar about insurance for the disabled – (we are not associated with this organization). Date:  April 30, 2014 Time:  10:00 am PT / 1:00 pm ET Register today! Health insurance coverage for patients with rare diseases has undergone significant changes in recent years. At the forefront are changes in how the […]

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Matt Smith and Family Are Looking to Raise Awareness of Ehlers-Danlos

Posted on March 2, 2014

EDS is not as “rare” as some people think ….. but it is “rarely diagnosed properly“! A very rare life-threatening disease that affects about one in every 250,000 people has struck three members of the same Skegness area family. All three were diagnosed at the end of last summer with Ehlers Danlos Syndrome – and […]

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Rare Disease Day – February 28, 2014

Posted on February 28, 2014

Rare Disease Day is an annual awareness-raising event sponsored by the National Organization for Rare Disorders (NORD) in the US. Rare Disease Day is coordinated by EURORDIS at the international level.   The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. […]

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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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How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
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