The Face of Rare Disorders in Canada
Thursday, September 26, 2013, 7 p.m.
Design Annex
118 James Street North, Hamilton
RSVP: The Face of Rare Disorders in Canada
Being diagnosed with a rare disease can be a lonely and frightening experience. These disorders are often poorly understood and don't generally inspire awareness campaigns in the same way that more common diseases do. As a result, people affected by rare diseases often feel abandoned. Couple this with a disease, whose symptoms can be disfiguring, and you have scleroderma – a progressive auto-immune disease.
Come and learn about the emotional, social and psychological challenges of having a condition with visible differences. As part of this public presentation, you will learn about a unique project that includes a travelling photo exhibit of the faces of scleroderma.
This free event is presented by the Canadian Institutes of Health Research Institute of Genetics. Space is limited.
Experts
Joep Welling
Scleroderma Framed Project, Netherlands
James Partridge
CEO, Changing Faces (UK)
Maureen Sauvé
Chair
Scleroderma Society of Canada
Maureen D. Mayes
Professor of Medicine
Director of the Scleroderma Clinic
University of Texas
Houston School of Medicine
Moderator
Durhane Wong-Rieger
President
Canadian Organization for Rare Disorders
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