Latest EDSNYC meeting minutes are up! Members can view them here: http://docs.edsnyc.org
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If you have currently have an EDS NYC login, you can use it here.
Useful Resources
EDNF
EDS Alert
EDS Today
EDS UK group
But You Don't Look Sick's EDS Forum
EDS Kids forum
EDS at the NIH
EDS at NORD
Fundraising
Ebay GivingWorks
Amazon picks
Funding Factory- ID#51542
CafePress Store
EVO.PEN
this pen is on permanent display in The Museum of Modern Art in New York, but it’s not my hand in the photo above:-)
a beautiful example of Adapting In Style, a radical design approach fitting a pen in the palm of your hand allowing form to follow functional need
made from solid brass and chrome plated, this pen is a fine writing instrument that can be enjoyed for a lifetime
“first writing instrument to receive a commendation from the American Arthritis Foundation and is widely recommended by physical therapists. The natural, ergonomic shape helps relieve the hand pain of writing caused by Arthritis, Carpal Tunnel Syndrome, Writer`s Cramp, Radial Nerve Damage and can assist users with conditions such as missing fingers, hand tremors, stroke, degenerative thumb joints, Hand Dystonia, Reflex Sympathetic Dystrophy, Dyslexia, and Chronic Hand Pain”
“ The purpose of this study is to examine cardiovascular and musculoskeletal complications of heritable connective tissue disorders (HDCT) and the natural history of these complications.
Manifestations of Heritable Disorders of Connective Tissue - Full Text View - ClinicalTrials.gov
EDS NYC in a nutshell.
We’re a group dedicated to supporting those affected by Ehlers-Danlos Syndrome. We raise funds to support the initiatives of our group, contribute to the EDNF and help fund desperately needed genetic research. We’ve been around for a few years and have grown more rapidly as Ehlers-Danlos pushes its way to the front of the medical community, leading to more frequent diagnosis. We’re still a long way from where we’d like to be, but there are a number of different organizations fighting for the visibility of Ehlers-Danlos Syndrome. This gives us a bit of hope.
If you’d like to support us, there are a number of ways to do so. You could donate directly to us, raise money while searching the web or shopping for things you would have bought anyway, sell stuff on Ebay, buy a shirt/mug/whatchamacallit or donate your used printer cartridges (we’re ID#51542). You could also get in touch with us and come to one of our meetings. You’ll meet other people with EDS and learn stuff that isn’t effectively communicated online. It’s fun to hear other people’s stories and the resounding laughter/groans when we can all relate. Helpful, too, in reaching the expanse of knowledge with which EDS patients must arm themselves.
We’re working on a real site, too. Email us and we’ll notify you when it’s up and running.
