Rare Disease Progams
An EDS Research Database for our German Doctors
To: John Ferman – President Chronic Pain Partners Thank you for the amazing work you are doing. It is exciting to hear about the great success of the EDS Physician CME program and the planned CEU program! We are creating a research database for our German doctors with publications and information on Ehlers-Danlos syndromes. Only […]
Free Webinar — “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients – Recording Available
Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com TOPIC: “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients PRESENTER: Diane O’Leary, PhD Dr. O’Leary is currently an Associate Adjunct Professor in philosophy at University of Maryland University College Click IMAGE for the recording of this presentation. Click here for the […]
EDS & Chiari “Unite@Night” Walks in Ohio
The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!
CN Tower Will Have Blue Lights to Commemorate Rare Disease Day
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 […]
Rare Disease Month Artwork Includes Ehlers-Danlos
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 […]
Rare Disease Day is February 28, 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!
