09 Jun Narcolepsy Education Collaboration Project
On November 7, 2015 the Narcolepsy Education Collaborative meeting assembled in Los Angeles, California to discuss and review draft toolkit materials to benefit the Narcolepsy community. 14 representatives from four Narcolepsy patient organizations, including two national groups and six patients, met to review educational toolbox materials focused on narcolepsy. We appreciate the efforts of Global Genes and SmithSolve Communications in organizing and hosting this meeting.
Narcolepsy Network was represented by the President of the Board of Trustees, Sarah Didavide, along with multiple organization board members and volunteers. Wake Up Narcolepsy was represented by Director & Co-Founder, Monica Gow, Board Member Anne Samarawickrama, and her husband, Prasanna, from Seattle, WA, and Gina and Matt Hieb of Sioux Falls, SD . Carrie Ostrea, Manager of Patient Advocacy at Global Genes, discussed with the meeting participants what it means to be a patient advocate, the importance of collaboration and the difference just one individual can make. Carrie also discussed the potential to organize and host regional Patient Meetups focused on narcolepsy in 2016. Participants from the national organizations collaborated and shared their feedback to the below listed toolkit materials:
- Boilerplate for advocacy organizations to use in news releases/media
- Narcolepsy Frequently Asked Questions (FAQ)
- Narcolepsy resource list
- Education Advocacy brochure, including IEP information
- Infographic on time to diagnosis
- Patient self-advocacy brochure
- Social media graphics and messaging
Feedback from meeting participants will be incorporated into the toolkit materials in the coming months. Once finalized, the toolkits will be distributed to Narcolepsy community members. A microsite will be launched in early 2016 and will house the toolkit materials along with other resources for the community.
Please visit WakeUpNarcolepsy.org for more information on narcolepsy.