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Karen Nielsen

Patient Advocate

After being diagnosed with scleroderma in 2005, Karen retired from the public work place in British Columbia and moved back to Ottawa where she began an intense self-education on the disease. Back in Ottawa she became, and still is, an active member of the scleroderma support group. It was at that time she decided to become a patient advocate. In 2009, she founded the Ottawa Walk in the park for Scleroderma, a fund raiser and to promote public awareness. She was elected to the board of director of the Scleroderma Society of Ontario (SSO) in 2010 and since then has made it her passion for public awareness. In 2014 she was ask to participate in the Scleroderma Patient Centred Intervention Network (SPIN). As a patient advisor, Karen contributes different methods to help patient deal with their disease.

Currently, Karen is active in public speaking on behalf of the SSO to assist in bringing support to scleroderma patients in less populated areas of Ontario, and is investigating new funding opportunities for the SSO.

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