North American partnership sparks greater awareness of rare disease
SAN FRANCISCO and BOSTON and HAMILTON, Ontario, June 22, 2015 /PRNewswire-USNewswire/ -- Scleroderma is a double-edged sword. It’s a difficult diagnosis, and because it is rare, patients often feel they suffer alone.
That’s why North America’s leading scleroderma advocacy and research organizations-- Scleroderma Foundation, Scleroderma Research Foundation and Scleroderma Society of Canadahave teamed up again during June’s Scleroderma Awareness Month under the campaign “Hard word. Harder disease.”
Their efforts are creating a buzz, particularly in social media, where bloggers are posting stories about friends and family members who have scleroderma.
“I first heard the word scleroderma in 1985-86 when one of my best friends was diagnosed with it,” blogger Donna Chaffins posted on Blog by Donna. “Because of that, I’ve been familiar with the disease for a while. Yet over the last 30 years, with the exception of my friend, I rarely hear the word.”
Chaffins is among a network of bloggers with whom the campaign is working to advance awareness of scleroderma by connecting with people on a personal, emotional level. The campaign touches on the difficulty of the word and the gravity of scleroderma. It is running 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. The campaign will leverage key opportunities throughout the month, notably World Scleroderma Day on June 29.
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.
Scleroderma Foundation
The Scleroderma Foundation is the national organization for people with scleroderma, their families and friends. Headquartered in the metro Boston area in Danvers, Mass., the Foundation has a network of 23 chapters and 150 support groups committed to carrying out the three-fold mission of support, education and research. The Scleroderma Foundation is one of the largest nonprofit funders of peer-reviewed medical research, making available at least $1 million per year in new research grants to find the cause, better treatments, and a cure for scleroderma.
Scleroderma Research Foundation
The Scleroderma Research Foundation (SRF) was established in 1987 by patient turned activist Sharon Monsky when research on this potentially life threatening illness was nearly nonexistent. Since our founding, we’ve stood firm in our belief that the best way to help scleroderma patients is to fund medical research aimed at improved therapies and a cure. Today, we are one of the nation’s largest nonprofit investors in scleroderma research. Patients and their loved ones find hope in the fact the SRF is dedicated exclusively to funding medical research that will help them live longer, fuller lives.
Scleroderma Society of Canada
The Scleroderma Society of Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives. The Scleroderma Society of Canada is committed to promoting public awareness, supporting those affected by scleroderma and funding research to find a cure. Until then, we will work to improve the quality of life for those with scleroderma.
Photo - http://photos.prnewswire.com/prnh/20150620/224533-INFO
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SOURCE Scleroderma Foundation
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