SCLERODERMA SOCIETY OF CANADA PARTNERING WITH UNITED STATES NONPROFITS TO MAKE MORE PEOPLE “SCLERODERMA AWARE”

Scleroderma is a hard word to pronounce, and a harder disease to endure than many. Three leading scleroderma advocacy and research organizations are teaming up again during June’s Scleroderma Awareness Month to boost awareness and compel greater compassion for patients and their families.

The primary partners are Scleroderma Society of Canada, Scleroderma Foundation and Scleroderma Research Foundation.
The campaign is named “Hard word. Harder disease.” The theme touches on the difficulty of the word and the gravity of scleroderma, a rare disease with no known cause or cure. It will run across partner Facebook and Twitter channels (#hardword) throughout the month of June, with visuals and copy that educate and challenge people to take a pledge to learn more.
“Scleroderma is difficult to diagnose, so patients often suffer for years before receiving a firm diagnosis,” said Maureen Sauve, president of the Scleroderma Society of Canada. “Because scleroderma is often misunderstood or unknown altogether, patients often feel isolated with their struggles. Working together, we can be more effective in broadening consumer awareness.”

Scleroderma is a crippling autoimmune disorder characterized by a thickening hardening of the skin that is so severe, it steals away the use of patients’ fingers, hands and limbs. As it advances across their bodies, the uncontrolled growth of fibrous tissue can damage patient’s hearts, lungs and other organs, often leading to a prolonged and painful death.

The campaign will leverage key opportunities throughout the month, notably World Scleroderma Day on June 29.

The Scleroderma Society of Canada is participating in June Awareness through the annual event “Walk or Run in the Park for Scleroderma,” which are held in Ontario, Manitoba, and Nova Scotia. The walks are the Scleroderma Society of Canada’s largest single fundraiser and provide invaluable resources for patient advocacy, education and for research that continues to enhance treatment and move ever closer to finding a cure.