Archive for the ‘Rare Disease Day’ Category
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 […]
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 […]
Posted on February 22, 2015
The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015! February 23-27 is Rare Disease Week on Capitol Hill. Please join the efforts to raise awareness for EDS!
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 […]
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 […]
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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