Atlantic Ehlers-Danlos Syndrome Society is a peer support network based in Halifax, Nova Scotia. Our primary goal is to bring together individuals and families in Atlantic Canada with the diagnosis of one of the Ehlers-Danlos syndromes or hypermobility spectrum disorders. In addition to facilitating a monthly peer support group held at the IWK Health Centre, we also strive for advocacy and education by sharing resources and making important connections in the medical field.
We can be reached through:
The ILC/EDS Charitable Foundation
The ILC/EDS Foundation is a national charity providing a comprehensive peer resource network and annual Canadian medical education (CME) accredited conference, catalyzing efforts to improve access to care to affected children and individuals. The ILC has committed in-kind contribution of $2M over five years to the Canadian Institute for Health Research Strategic Patient Oriented Research (CIHR-SPOR) Chronic Pain Network, connecting the EDS patient population with researchers to help shape the kinds of national and international (with the Society) studies that will be done.
A national non-profit organization that dates back to 2009 grown through our online private support group to approximately 500 members. We received our non profit status in 2013. We advocate with legislators, researchers and medical professionals while also supporting adults and families through a very active online group. In addition, we hold peer-to-peer support groups and socials across the provinces.
To add your EDS support group or charity, please complete the Support Group Listing Request form. To become an affiliate of the Society, please visit the Global Affiliation Program page.