North American Nonprofits Partnering To Create Awareness For Scleroderma

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by Isaura Santos |

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Three leading organizations focused on scleroderma advocacy and research are partnering during June’s Scleroderma Awareness Month in order to boost awareness and compassion for those who suffer from the disease and their families. The Scleroderma Foundation, Scleroderma Research Foundation and Scleroderma Society of Canada are the primary partners in the effort.

This campaign is titled “Hard word. Harder disease.” The main goal of this year’s theme is to focus on the difficulty of not only the word “scleroderma” but also on the enormous gravity of the disease itself, which is a rare disease with no cure. Using the #hardword hashtag, the campaign will be promoted on Twitter and Facebook channels throughout June, with content and visuals to educate and challenge people to learn more about the disease.

This campaign includes blogger outreach as well throughout North America. The microsite is the landing page for general information concerning scleroderma, with additional links to other resources.

“With the recent breakthroughs in research and the growing interest from industry, we are very optimistic about what the future holds for scleroderma patients. It is through the collective efforts of our organizations that will continue to accelerate progress,” explained Amy Hewitt, who is the Scleroderma Research Foundation’s executive director.

Scleroderma is a debilitating autoimmune disorder that leads to hardening and thickening of the skin. It is a very severe condition that compromises the use of hands, fingers and limbs. As the disease develops, there is an uncontrolled growth of fibrous tissue that can damage patients’ lungs, hearts and other organs, ultimately leading to a painful and prolonged death.

Maureen Sauve, who is the president of the Scleroderma Society of Canada, added“Scleroderma is difficult to diagnose, so patients often suffer for years before receiving a firm diagnosis. 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.”

“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,” concluded Robert J. Riggs, CEO for the Scleroderma Foundation. “It’s the walk a mile in someone’s shoes philosophy. While one may not have an immediate connection with scleroderma, one can certainly relate to the symptoms and challenges associated with the disease.”