Inspire Case Study: Bringing attention to a rare disease
The Challenge
Encephalitis Global, Inc., has big goals, but a small staff and budget. Encephalitis Global’s mission is to share information and support between survivors, caregivers, loved ones, and people who seek to understand. Also, the association looks to raise awareness among relevant professionals and the wider public about the condition and subsequent problems, and to promote research into encephalitis.
Encephalitis Global founders Wendy Station of Vancouver and Ingrid Guerci of New York wanted to establish more online presence for the association. They also recognized the value in creating an online community where members could share information about encephalitis. When Wendy was first diagnosed back in 1999, her family searched the library and the Internet to learn more about encephalitis, but came up empty-handed. They found no North American information resources available to the public.
Since being struck by encephalitis, Wendy works to raise awareness about the disease via her Web site, Encephalitis Global. She is included as a telephone contact for encephalitis information with the National Organization for Rare Disorders in the USA, and was a guest witness testifying in October 2004 to the Congressional Government Reform Subcommittee in Washington DC explaining the impact of encephalitis to a session discussing the “Current Challenges in Combating the West Nile Virus.” Encephalitis Global also is included as a support group on the website of the Johns Hopkins Medicine Encephalitis Center. Encephalitis Global’s first online discussion forum was extremely difficult for Station and Guerci to manage. It was an MSN public group forum where random members would join and make extremely inappropriate and hurtful comments.
The Solution
Station and Guerci worked with Inspire to migrate the MSN group onto an Inspire platform. The Encephalitis Global Support Community on Inspire offers a level of professionalism and ease of use, which has reduced membership “babysitting” to zero for Station and Guerci.
“Inspire understood the needs of a small and niche organization, and that a one-size solution does not fit all patient advocacy organizations,” Station noted. Inspire technology directors worked with Station and Guerci to ensure that the online community could be managed easily and without an undue amount of time and effort on the part of Encephalitis Global.
The Results
Encephalitis Global quickly saw an increase in activity on the Encephalitis Global Support Community, which became a go-to resource for sharing information and support. “Since starting the Inspire forum in the spring of 2008, we’ve enjoyed a steady increase in membership,” Station noted. “We currently have about 1,000 members, and an average of 200 messages, responses and/or journal entries are posted each week.”
One community member, in an online review of the Encephalitis Global Support Community, wrote: “Encephalitis Global, Inc. provides an excellent source for survivors of encephalitis, caregivers and family members. Encephalitis, recovery and rehabilitation can be mysterious, puzzling and extremely stressful for all involved. Whether the formal diagnosis is viral, bacterial or a resulting condition from head and brain injuries, the Encephalitis Global, Inc. forum is a place for survivors and caregivers to gather and share experiences and suggestions. Common residual deficits, both cognitive and physical, are easier to understand and cope with when information is shared among survivors and other caregivers. The founders of Encephalitis Global, Inc., Wendy and Ingrid, are both survivors of Encephalitis. They have provided online access to a safe and nurturing environment.”
Helping to raise awareness about encephalitis
Working with Inspire, Station wrote an op-ed column about her experience in attending a brain injury conference in her home city of Vancouver. Station has gotten the column published and is looking for other media placements. “It was great to get help from Inspire in the editing process, just to get it started and to brainstorm about publication opportunities,” Station noted, adding, “It is my goal to have the topic of encephalitis included in every brain injury association website across North America. We’re glad we have Inspire as a partner.”
About Inspire
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 danielle@inspire.com, to learn how your association can benefit from this free service.
