Wednesday, November 25, 2015

Narcolepsy Education Collaborative

Early this month, I was surprised and truly excited to be asked to participate in a Narcolepsy education project. My participation in the project was to attend a meeting where we reviewed and provided feedback on materials that will soon be put together to create a toolkit of information for the Narcolepsy community.

This was just one step in many that are to come before the final toolkit can be revealed, and I am more than excited to see how this will help our Narcolepsy community to grow!
(Grow by means of people with Narcolepsy becoming better informed and empowered to be self-advocates. And yes, grow by increasing awareness to hopefully help those who are undiagnosed finally get their diagnosis. While that is not something to be particularly excited about, it's still necessary!)  

These 14 representatives from the Narcolepsy community met on Nov. 7th
to review and provide feedback on a draft of the Narcolepsy toolkit materials.

Read on for the full official summary of the meeting:

"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, and several other organization members. 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."