The Scleroderma Foundation wanted to increase the membership of its online community but felt constricted by the platform on which it was created. Moving to a more modern and robust social network was necessary, but a variety of worries, including cost and the reaction from members active on the existing community were among the stumbling blocks to modernizing.
Social media did come easily to the Scleroderma Foundation. The Foundation already had a strong presence on Facebook, and was using it to communicate with patients and their families. With the help of social networking sites, the Foundation has been able to promote public awareness of the disease and help raise funds from people who otherwise would not have heard of scleroderma. The broad reach and scope of sites such as Facebook have made scleroderma information more accessible to people around the world. With nearly 4,000 monthly active users from across the globe including the U.S., Canada, United Kingdom, Australia and Mexico, the Foundation's Facebook Page has become a go-to resource for people wanting information about scleroderma. It has served as a gateway to notify users of other Foundation resources such as its Web site, e-mail newsletter and toll-free patient information hotline.
Still, the capabilities of social networking sites didn't meet the communication or discussion needs of the scleroderma community or the Foundation.
Founded in 1989, the Foundation has a three-fold mission – to help patients and their families cope with scleroderma, promote public awareness and education, and stimulate and support research to improve treatment of scleroderma. The Foundation is the leading non-profit supporter of scleroderma research in the US, allotting an average of $1 million annually to find the cause of, and cure for, scleroderma.
The Foundation worked with Inspire to migrate its discussion board to the Inspire platform, creating the Scleroderma Foundation Support Community.
"We anticipated there would be technical issues to address, but the transition went smoother than we even hoped," said Kerri Connolly, the Foundation's Director of Programs & Services.
The Inspire team communicated with the Foundation and users about the migration every step of the way and were available to answer any questions or concerns.
Inspire now monitors the community and ensures that only relevant and appropriate discussions are taking place. Any questionable or inappropriate posts are immediately identified and addressed by Inspire moderators.
"The results have been exceptional," Connolly said. "The community is described by users to be more user friendly, threads are clearly defined and easier to maneuver."
Partnering with Inspire has saved 10 hours a week in Foundation staff time that had been devoted to managing the old discussion board.
Since the migration to Inspire, the Foundation has seen a significant increase in new users. Patients, family, and caregivers can communicate and gain support and insight from others in the Scleroderma community. Through the daily alerts sent from Inspire, Foundation staff members can easily monitor and identify emerging trends and topics that members are discussing.
With more than 80 partnerships with leading national patient advocacy organizations, Inspire (www.inspire.com) creates and manages secure online communities, organized by medical condition. Inspire communities are moderated, secure, and free to nonprofits. Inspire communities give nonprofits a turnkey social media platform for messaging, fundraising and more. Contact Danielle Leach, Inspire's Director of Partnerships, at email@example.com, to learn how your association can benefit from this free service.