Conversion of empty building among ‘innovative’ strategies for juvenile arthritis awareness
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Converting an empty building into an information hub and social media campaigns were among the “innovative” strategies employed by a U.K.-based patient organization to raise awareness of juvenile arthritis, according to EULAR.
“These ideas can also be replicated in other areas, and they are providing good examples on how to deliver key messages that are based on high-quality and verified clinical information,” Elsa Frazao Mateus, PhD, vice president of the EULAR People with Arthritis/Rheumatism Across Europe committee, said during a press conference at the 2024 EULAR Congress. “Taking advantage of innovative approaches is something that we really need when we want to call attention to these more ignored issues.”
Mateus highlighted data from Juvenile Arthritis Research, a patient organization based in the United Kingdom that is focused solely on juvenile idiopathic arthritis, on initiatives it conducted at the local and national level to raise awareness of the disease. In their study, the organization’s founders — Richard Beesley, PhD, and Rebecca Beesley — wrote that low awareness of JIA is “associated with delays in diagnosis, worse clinical outcomes and adverse societal factors, such as stigma and isolation.”
The group’s projects included providing schools with more than 7,500 resource packs with informational bookmarks, stickers, badges and leaflets; offering clothing with “awareness-raising messaging” at local events; and a #ThinkJIA social media campaign and website that reaches 12,000 unique users a year, the researchers wrote.
The organization additionally converted an empty building into what it described as an information hub, with large signs regarding JIA facing outward from the windows, in full view of more than 20,000 vehicles that pass every day. Reuse of the building “generated significant interest” locally, the organization wrote.
According to Mateus, these projects are “very interesting” because they were inexpensive to get up and running.
“They are low-cost, and we know that patient organizations usually [struggle] with funding and resources to be able to promote their initiatives,” Mateus said.
“These initiatives were very successful,” she added. “Hopefully they will contribute to raise awareness and, through reduced delays on diagnosis lessen the burden of loneliness and stigma.”
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Beesley R. OP0102-PARE. Presented at: EULAR 2024 Congress; June 12 to June 15, 2024, Vienna, Austria.
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