North American Agencies Partner During National Scleroderma Awareness Month to Grow "Know" Community
Thursday, June 5, 2014
By: Christina Relacion

The primary partners are Scleroderma Foundation, Scleroderma Research Foundation and Scleroderma Society of Canada.

SAN FRANCISCO, BOSTON and HAMILTON, Ontario, June 5, 2014 - Some of North America’s leading scleroderma advocacy and research organizations today announced they are joining forces during June’s Scleroderma Awareness Month, with a social media campaign to compel more people to learn more about the little-known and often misunderstood disease.

The campaign is named “Hard word. Harder disease.” The theme touches on the complexity 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. A microsite, sclerodermaaware.org, serves as the landing page for the pledge and general information about scleroderma with links to additional resources.

“Individually our foundations are working hard to raise awareness, provide support and critical funds for research,” said Amy Hewitt, executive director for the Scleroderma Research Foundation. “Collectively, in the United States and Canada, by uniting our voices and social media strategies, we stand to make an even greater impact.”

Scleroderma is a crippling autoimmune disorder characterized by a thickening and 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 patients’ hearts, lungs and other organs, often leading to a prolonged and painful death.

“Not only do scleroderma patients struggle with a disease, but they struggle with a disease that not many know about,” said Maureen Sauve, president of the Scleroderma Society of Canada. “Isolated and alone with scleroderma, many patients feel they suffer in silence. Together during this campaign, we hope to broaden our community.”

The campaign will leverage key opportunities throughout the month, notably World Scleroderma Day on June 29. The campaign also complements a digital billboard on 42nd Street in New York City that will run June 1 to July 15.

“Our strategy is to compel those who are not immediately impacted by scleroderma to relate to the disease, and therefore be more likely to empathize,” said Robert J. Riggs, chief executive officer for the Scleroderma Foundation. “To this end, the messaging will attempt to make an emotional connection with anyone who encounters it—particularly those who may know little or nothing about it.”