Narcolepsy Network is a long-standing patient organization dedicated to improving the lives of individuals with narcolepsy and idiopathic hypersomnia (IH). It was established in 1986 by a group of 11 women with the goal of increasing awareness of the benefits of early diagnosis while supporting and promoting narcolepsy research. At the time there were no treatments for narcolepsy.
Advocacy
In 1990, Narcolepsy Network met with Congress to advocate for a sleep research center. As a result, in 1993 President Clinton signed an act that created the National Center for Sleep Disorders Research within the National Institute of Health. The organization has since increased advocacy efforts to better address the broader medical community. This includes actively speaking out to preserve and advance research, educating medical practitioners, and promoting access to care. By engaging with the larger rare disease community, Narcolepsy Network is able to accomplish much more.
Collective Voice
A key driver of Narcolepsy Network’s success is its Collective Voice initiative, focused on listening programs and learning from each patient’s unique journey. Narcolepsy and IH affect each patient differently: from a wide range of symptoms and different impacts on lifestyles and quality-of-life, to individualized coping strategies. “As a result of our commitment to active listening programs, we’re able to understand, knit together, and respond to the Collective Voice of the community with more effective and engaging programs that are relevant to each individual, as well as the community as-a-whole,” said Narcolepsy Network Executive Director, Amy Kant. “This allows us to model what we hear from people, but you can’t do this unless you’re listening.”
Education
The Narcolepsy Network has many avenues for education. They host weekly online support groups and provide training, financial assistance, and tools to third parties interested in running local in-person or virtual meetings.
Narcolepsy Network’s signature national conference attracts attendees from across the U.S. This year marks the 38th Annual Conference being held in Minneapolis, Minnesota from October 24-26. The conference is a highly anticipated experience where people meet, connect and interact with others living with narcolepsy and IH. Attendees form long-lasting, supportive relationships, and overwhelmingly are empowered when realizing they’re not alone.
Narcolepsy Network hosts monthly lifestyle and clinical webinars and publishes a steady stream of popular digital and social media content, a weekly newsletter, brochures, and much more.
Research and Awareness
Narcolepsy Network’s leadership advocates for research and funding by engaging with government officials and through its annual “Suddenly Sleepy Saturday” grassroots campaign.
When pharmaceutical companies and academic institutions have opportunities for people with narcolepsy or IH to participate in research studies, Narcolepsy Network conducts its “Clinical Update” program.
Narcolepsy Network stresses that neutrality is of utmost importance in its research and educational programs. While they’re a source of the latest information on pharmaceutical and academic research, they will not endorse or selectively promote a specific study or trial.
Bridging Legacy to The Future
Narcolepsy Network is actively working to bridge its rich history with the evolving needs of younger digital generations and modern-day healthcare. Coupling advances in technology with patient-centric practices will ensure Narcolepsy Network remains relevant and supportive of the community’s needs.
Website: https://narcolepsynetwork.org/