Money & Business

Online Community Helps Lupus Patients Find Social Support

By / Sep 5, 2017 (Ani_Ka/DigitalVision Vectors/Getty Images Plus)

The Lupus Foundation of America recently launched an online community where patients and caregivers can share resources, experiences, and insight.

In an effort to provide a welcoming space for lupus patients and their loved ones, the Lupus Foundation of America and Inspire recently created a free online community called LupusConnect.

Launched on August 29, LupusConnect allows patients and caregivers to share their experiences and discover ways others are coping with the disease. Whether they are pregnant, newly diagnosed, or caring for someone who has the disease, members can join a wide range of lupus-related group discussions. Members can also befriend others online, customize their personal profiles, and message fellow members directly.

Mary Crimmings, vice president of marketing and communications for the Lupus Foundation of America, said LupusConnect provides a “social outlet” for patients who often feel isolated. “It’s timeless support,” she said. Because it is open 24/7, LupusConnect is a convenient option for members who are too sick to leave home or who don’t have a local support group.

Through research, surveys, and daily conversations with members, the Lupus Foundation of America was able to gain valuable insight into their constituents’ needs. “We learned that the majority wanted a place where they can connect with others without having to leave their home,” Crimmings said.

After talking to other nonprofits and disease-related organizations about their online communities, the Lupus Foundation of America decided to partner with Inspire, a patient engagement platform that works with organizations to create and manage support communities for patients and caregivers. Crimmings said the partnership allowed the foundation to develop a platform tailored to its needs, while also driving traffic from LupusConnect to the group’s other services.

As for getting involved in the online community, The Lupus Foundation of America maintains a mostly hands-off approach so far. “We are really trying to let this be a community of members,” Crimmings said. She added that the foundation has explored the possibility of incorporating a number of new features, including an “Ask the Expert” chat function, a Spanish-language forum, and closed groups designed for specific audiences such as teens and caregivers. However, for now, she said the group intends to listen and evaluate.

“We definitely have some ideas of what we’d like to do in the future, but it’s all going to be directed and will evolve based on the interests and needs of the community,” Crimmings said.

Thorne McFarlane

Thorne is an assistant editor for Associations Now and a literature buff who loves a great story. Have something interesting to share? Send it his way. More »

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