Our team set out to forge the relationships of two national narcolepsy organizations. We constructed a meeting to strengthen their partnership and build trust among the national narcolepsy advocacy groups. Together with the non-profit organization, Global Genes, SmithSolve created a forum for leaders of the narcolepsy community to share current challenges and unmet needs. Our team educated participants on the benefits of working together and collaborating to achieve greater results and secured consensus among both parties to execute a joint narcolepsy patient education program. The organizations agreed to work collaboratively on programs to meet the needs of the narcolepsy patient community.
In November 2015, the Narcolepsy Education Collaborative meeting assembled in Los Angeles, California. Fourteen representatives from four Narcolepsy patient organizations, including two national groups and six patients, met to review educational toolbox materials focused on narcolepsy. The meeting provided participants with an overview on what it means to be an active patient advocate, the importance of collaboration and the impact just one individual can make.
Together with national narcolepsy organizations, SmithSolve developed a toolbox of educational materials, including a detailed FAQ, resources for working with schools, becoming your own advocate, an infographic on time to diagnosis and other elements, that exhibit a unified, consistent message across the narcolepsy advocacy community.
Today, with much guidance, the groups have effectively collaborated to produce a customized toolbox of materials featuring a newly developed, co-branded design. These materials will be disseminated through multiple communication and social media channels and will be used to empower and educate newly diagnosed patients, already identified patients, caregivers, educators and other community members about narcolepsy.
The road to a successful outcome was not an easy one. The team encountered many bumps along the way, but the program was made possible through persistence, collaboration, and the belief that ultimately, the outcome would outweigh the obstacles.