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Introducing the Narcolepsy Education Toolbox by Global Genes, Narcolepsy Network and Wake Up Narcolepsy

April 7, 2016

The Narcolepsy Education Toolbox is a collaboration between Narcolepsy Network and Wake Up Narcolepsy, two nonprofit patient advocacy organizations dedicated to supporting and informing the narcolepsy patient community. This site allows you to read and download individual elements of the Toolbox to print, email and distribute in order to raise awareness and provide the latest information about narcolepsy.
What will the Toolbox include?
  • Frequently Asked Questions
  • Becoming Your Own Advocate
  • Working with Schools
  • Time to Diagnosis
  • Doctor’s Appointment Checklist
  • Narcolepsy Resource List

See it all here.

Through this project partnership, the Toolbox offers resources to help patients and families on their journey; and tools to inform educators, employers and the public about narcolepsy, debunk misconceptions about this rare disease, and build understanding of its symptoms and severity. Global Genes, a leading rare disease advocacy organization, facilitated this collaborative project, in pursuit of its mission, To Eliminate the Challenges of Rare Disease.

To order hard copies of the Toolbox, connect with Narcolepsy Network or Wake Up Narcolepsy:

Narcolepsy Network

Narcolepsy Network® is a national nonprofit organization dedicated to increasing early diagnosis of narcolepsy, advocating for and supporting persons with narcolepsy and their families, and promoting critical research for treatment and a cure. More information about narcolepsy and Narcolepsy Network is available at www.narcolepsynetwork.org.

Wake Up Narcolepsy

Wake Up Narcolepsy, Inc. is an international nonprofit advocacy organization focused on increasing narcolepsy awareness and funding world-leading research for faster diagnosis and improved treatment for this debilitating sleep disorder, all while providing supportive resources for people with narcolepsy and their loved ones. More information about narcolepsy and Wake Up Narcolepsy is available at www.wakeupnarcolepsy.org

About Global Genes

Global Genes is a leading global rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.

The Narcolepsy Education Toolbox and this website are funded by an unrestricted educational grant from Jazz Pharmaceuticals.

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