The patient engagement platform Inspire has partnered with the Lupus Foundation of America to launch LupusConnect, an online community that allows lupus patients and their families and friends to share experiences, emotional support, and tips to help people manage daily struggles from the disease.
The Lupus Foundation of America recently conducted a study to better understand factors that affect lupus patients. They determined that most people with lupus need better social support and assistance, especially online, to help cope with the disease.
In response, the foundation partnered with Inspire to create an online community designed to provide a space for people affected by lupus to share their experiences, learn from others, and gain insight.
“No matter how isolated lupus can make people feel, LupusConnect offers people the opportunity to express their fears, frustrations, and hopes with others who understand lupus firsthand,” Sandra C. Raymond, Lupus Foundation of America CEO, said in a press release. “We are excited to partner with Inspire and to continue our commitment to providing people impacted by lupus with access to high-quality resources and support services.”
Everyone affected by lupus is encouraged to join LupusConnect, a free service. After signing up, members gain 24/7 access to an array of discussion topics posted by the lupus community.
The website’s welcoming environment allows members to personalize their profile, follow specific posts and threads, and engage in discussion with lupus patients or their loved ones. Members also can send each other direct messages for further information about their experiences or to obtain coping tips.
“In my experience, I’ve found that no matter what I’m going through with lupus, physically or emotionally, chances are that someone online has also gone through it,” said Joanna Mechlinski, who was diagnosed with lupus in 2002. “Within moments, I can connect with people who can give me advice or just empathize in a way that most healthy people can’t. With the launch of this new lupus online community, I hope to be able to make some new friends who understand what I’m going through.”
Inspire, the largest patient engagement platform in the U.S., has partnered with more than 100 disease-related organizations to create similar websites and support communities online. It also allows members of the pharmaceutical industry to connect with patients for possible participation in clinical or market research.
“We are thrilled to partner with the Lupus Foundation of America, as it’s the leading national voluntary health organization for lupus,” said Inspire CEO Brian Loew. “Together, we have built a powerful social support platform designed specifically for people impacted by lupus. We are proud that through LupusConnect, we are supporting the Foundation’s efforts of advancing lupus research, and expanding resources and support for patients.”
LupusConnect, an easy-to-use online platform, urges its members to pose questions, reply to other people’s posts, and take in the information relayed by other individuals’ experiences. This service is offered to all members, regardless of location, background, or status.
Visit LupusConnect at: https://www.inspire.com/groups/lupusconnect/.