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A message from the Board of Directors regarding the use of Narcolepsy Network’s name

July 25th, 2023

For nearly 40 years, Narcolepsy Network has been a source of advocacy, education, and support to you. You often think of us when we host our renowned Annual Conference—an immersive experience that connects, engages, and educates people with Narcolepsy and Idiopathic Hypersomnia. Over the past 5 years, we have grown our program offerings to address your evolving needs with clinical updates, education on research, lifestyle and clinical webinars, youth advocacy programs, storytelling, and more.

As the only member-governed organization in this space, we have checks and balances built into our bylaws that ensure accountability for our membership. Our governing rules have been carefully crafted over the years. These rules require us to listen and respect the voices of our membership and many other supporters. This also means we have a duty to protect our name, reputation, and the unique role we have played—and continue to play—as a patient–driven organization.

Sadly, we were recently alerted that another charitable organization in this space is using our trademark (Narcolepsy Network) to promote and drive people to their organization in paid Google search advertisements. While we are disheartened as a Board, it is our responsibility to share this information publicly with you. This advertisement using our name in Google may lead to confusion and possibly distrust in our work, as well as other important work being done in the sleep space.

With this in mind, we want to assure you as a supporter, partner, and / or member, we will continue to safeguard our name and preserve the trust that we have built with you over the last 37 years. We value our work together, and will continue to clarify our unique role, brand, and patient–focused services in the advocacy space. Many years of hard work and the contributions of hundreds of members, volunteers, and supporters have and continue to make a significant difference in the lives of people with Narcolepsy or Idiopathic Hypersomnia. Your voice and efforts matter.

If you would like to contact us regarding this information, please send an email to [email protected]. We thank you for making Narcolepsy Network a trusted and valued resource.

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Date Created: July 25th, 2023
Last Updated: December 21st, 2023