Like millions of Canadians, I am afflicted with a rare disorder. This disorder has propelled me to create a link to others in Canada with this syndrome in hopes of learning more, establishing a greater understanding of this disorder with the medical community, and to work to bring closer, those affected and afflicted by this syndrome. We need not be alone.
Since our beginning in November of 1996, a great deal has been accomplished. We have maintained contact with many areas of the medical community across Canada. We have created an on-line listserv which strives to strengthen the bond with many who suffer from this syndrome. We have established several provincial support networks which allow for a regional source of support for our members and links to needed medical care and representation. We have established a source of support and link via a bi-monthly newsletter.
relies heavily upon the wonderful volunteers that help keep the vision of alive in their province. Please read on and learn about our Trustee’s who help maintain our organization and support members in their provinces!
It is my hope that will increase in membership through education, public relations and support. Ehlers-Danlos Syndrome is a rare syndrome, but we need not feel isolated with it’s diagnosis. “With joined hands, we are strong”