Rare disease community members at event.

Narcolepsy Network

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The Narcolepsy Network is a national voluntary organization that was formed to serve the needs of people with narcolepsy. Narcolepsy Network is gearing up for their annual conference which will be taking place this coming weekend, October 9-11 in Minneapolis, Minnesota. Click here to learn more about the must attend conference for those living with narcolepsy.


1.) What does it mean to you personally to be a patient organization serving the rare community?

Narcolepsy Network is truly a patient-focused organization.  Many of our board and staff members are people with narcolepsy or have a close family member with narcolepsy.  This personal connection among the people who work to support our mission keeps us focused on the needs of people with narcolepsy and helps us live our mission every day.

2.) What do you find your patient community values most from your organization?

Without a doubt, our annual conference is our most valued program.  Every year for the last 30 years, NN has brought people with narcolepsy and their supporters together to learn from each other. We also bring in nationally and internationally recognized researchers and medical specialists to speak at the conference.  For many people who attend the conference, it’s the first time they have every met another person with narcolepsy.  People who attend get comprehensive information about narcolepsy from the latest in treatment and research to lifestyle and coping techniques and support from fellow people with narcolepsy.  Many people over the years have described the conference as a life-changing experience.

In 2014, more than 450 people came to our conference in Denver.  We expect even more this year when we meet in Minneapolis October 9-11.

3.) What are some of the challenges your organization has faced?

Public attitudes towards sleep and being tired are an ongoing challenge. While many people are starting to recognize the importance of sleep in overall health, the ideas that sleeping equals laziness and that everyone is tired sometimes can make it difficult for people with narcolepsy to receive the treatment and support they need and deserve.  Our partnerships with organizations such as NORD and our ongoing awareness efforts and outreach programs to educators, health care professionals and the general public are working to change these attitudes, increase the rate of early and accurate diagnosis and improve the supports offered to those living with narcolepsy.

4.) Whats been your most successful awareness campaign and/or fundraising event?

Our Suddenly Sleepy Saturday/Narcolepsy Awareness Day efforts.  For several years, Narcolepsy Network has encouraged supporters to request official Suddenly Sleepy Saturday proclamations from their state governors or local government offices.  The program has grown steadily, and in 2015, proclamations were requested in 47 U.S. states.  Governors in 30 states signed proclamation recognizing March 7, 2015 as Suddenly Sleepy Saturday.  Proclamations were also requested in a number of U.S. cities as well as in Canada and Australia. Narcolepsy Network has also increased its online promotion of Suddenly Sleepy Saturday, with the 2015 social media campaign reaching more than 108,000 people during the first week in March.


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NORD is happy to be putting the spotlight on the Narcolepsy Network this week. You can look forward to social media posts on our Facebook and Twitter accounts about Narcolepsy Network throughout the week! Member Organizations to NORD interested in Member Spotlight should contact their regional membership managers at NORD to learn more!