Your priorities for us, based on your responses to our Community Listening Survey

Earlier this year, with the 40th anniversary of Narcolepsy Network approaching, we asked you, our community, what matters most about what we do, and what else you might want from us in future.

The survey response was strong, with more than 125 community members sharing their personal perspectives on Narcolepsy Network’s key priorities. That input will help us as we shape our programs in 2026, and in the years to follow.

We’ll be doing that work with a new executive director at the helm of Narcolepsy Network,  following interim director Amy Kant stepping down earlier this year, after five years of sterling service.

Stay tuned as we announce the new leader shortly. At that time,  we will also share your input on the second topic we included in our survey: your priorities for the next Narcolepsy Network executive director. We’re delighted to say that what emerged as most important will be embodied by our new hire or aligned with the new Executive Director’s initial thinking for the new job.

Narcolepsy Network’s Board of Directors would like to extend our sincere gratitude to everyone who participated in our recent survey. Your input was invaluable. While we can’t guarantee that every priority you listed will be part of our 2026 program, we’ll strongly consider your preferences as we finetune our activities in the year ahead, and plan for 2027.

Now here’s a rundown of what you told us about your future priorities for our organization. 

Which Narcolepsy Network Programs and Tools Have Most Impacted You? 

Over the years – and even continuing to this day – Narcolepsy Network has carried out a range of programs and offered a number of tools and other resources for the community. We asked you about these efforts, including which matter the most to you.

We’re delighted that your feedback on this question strongly reinforced that Narcolepsy Network’s programs are important, even vital, to many of you.

Unsurprisingly, you indicated, some more important than others. Here, listed from most to least meaningful for respondents is the group’s ranking of which Network services matter most and least to you.

1. Connection and Community Support

The highest priority to emerge from survey respondents was for programs and tools that help you connect to one another, and seek support from the group.

Here, also in rank order, are the components for connecting and offering support that mattered most to you: 

• Annual Conferences: Frequently cited as “life-changing,” you indicated these events provide a rare opportunity for in-person networking. For patients and their families (including spouses and children), the consensus was that conferences make one’s condition feel less isolating and help those who support people who have narcolepsy or IH better understand the daily challenges their loved one faces.
  
• Support Groups (Online and In-Person): Mostly virtual since the pandemic, our support groups include a weekly meetup for people with narcolepsy and IH, and a twice-monthly session for those (including parents, partners, siblings) who support people with those conditions. Groups were endorsed as offering a safe space for sensitive discussions that participants feel they cannot have anywhere else – including assisting newly diagnosed people with advice and insights.
  
• Peer Mentorship: Over the years, Narcolepsy Network has also sometimes maintained formal programs to allow people who have been living with Narcolepsy or IH to support and share insights with newly diagnosed individuals and caregivers. Respondents endorsed the value of such partnerships.

2.     Research, Treatment, and Clinical Updates

After activities that focus on connection and support, the Narcolepsy Network services deemed to be the next most valuable were aimed at helping the community engage with complex medical data and treatment options. 

• Newsletters and Clinical Alerts were valued for being “quick and regular,” allowing patients to stay informed on drug trials, new medications, and research without having to hunt for the information themselves.
  
• Webinars and Other Presentations help patients keep pace with – and make sense of – the latest science from top doctors and researchers. You said this knowledge educates you and increases your confidence to “ask better questions” during medical appointments.

Self-Advocacy Resources

As many people with narcolepsy and IH have told us, it’s not enough to have support from family and friends, medical providers, and other professionals in their lives. It’s also valuable to have resources to help them to advocate effectively – including with employers, insurers, educators, and healthcare providers.

These are the resources you said were important and empowering when it comes to having you take control of treating your condition and its implications for your life: 

• Navigational Resources such as information on 504 Plans and financial assistance programs for medication were cited as essential for maintaining a high quality of life and professional/academic functioning.
  
• Educational Materials, aside from our weekly news and updates. You said that Narcolepsy Network’s educational brochures and pamphlets, devoted to definitions and explanations of narcolepsy and IH, serve as primary resources. These were especially cited as helpful to people who are newly diagnosed, or trying to educate others in their life – including doctors, friends, and family – about what the condition is and how it affects  your health and day-to-day functioning.
  
• Awareness Campaigns, such as sending proclamations to local mayors for Suddenly Sleepy Saturday. You told us that initiatives like this provide a sense of agency and purpose.

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What Programs Should Narcolepsy Network Launch or Expand in Future?

To supplement your input on what you most value in Narcolepsy Network’s current work, we asked you to identify where you’d like us to devote more resources. We 100% agree with your ideas and recognize how valuable they are. We will keep them in mind for actual programming and new services if execution does not distract from Narcolepsy Network’s main mission. At minimum, we can incorporate information and third-party resources into our existing efforts, content, and expanded partnerships.

Here are the top five programs on your wish lists for additional attention by our organization:

1. Advanced Medical & Research Briefings: You requested that we dig “deeper” into narcolepsy and IH research and resulting medications. Examples you provided include high-level webinars on topics such as emerging treatments (like orexin agonists) and specific physiological impacts (bone loss, dopamine levels) beyond the basic information yielded from, say, a Google search.
   
2. Practical “Life Hack” & Skill-Building Workshops: You endorsed the idea of sessions focused on the non-medical burdens of narcolepsy, such as role-playing self-advocacy conversations, disability-friendly diets and meal preparation, and/or tools and resources to simplify how we manage our lives, like using a note-taking app to better cope with brain fog.
   
3. Clinician Referrals: Finding practitioners in your area who are effective in treating narcolepsy and IH can be a major challenge. You indicated how valuable it would be for Narcolepsy Network to have a searchable directory of specialists who are demonstrably  knowledgeable about resting your conditions. This indicates you might be unaware of the link on our website to the American Academy of Sleep Medicine directory of sleep centers across the country. Clearly there’s an opportunity for Narcolepsy Network to more readily highlight resources like this through our ongoing eNews and social media posts.
4. Provider Education: There are serious shortcomings within the broader medical community around awareness of narcolepsy and IH, diagnosing and treating it, and how it affects people’s lives. You endorsed the idea of “certification” programs or other educational efforts for doctors to improve their understanding of the patient’s lived experience.
5. Diverse Connection Points: You called for expanding beyond the current array of Zoom support calls to include in-person regional gatherings, frequent “meet-and-greets” for social connection, and specialized groups for minority voices and parents.

How Important Are Co-Morbidities to You, and What are Their Major Challenges?

Many people who have narcolepsy or IH also manage additional psychiatric, sleep, or physical health conditions. Scientific studies can tell us the incidence of such co-morbidities, but not the specific challenges they create for your life. 

So we asked about that importance. Only one in four of respondents reported that it’s not very important that we address co-morbidities. The remaining three-quarters of you said such coverage from Narcolepsy Network was somewhat important or very important. 

We also asked about the issues that co-morbidities create for you. The topics below rose to the top of the list. These should therefore be priorities for us in our coverage of co-morbidities. (In some cases we already cover these; however, clearly there are challenges that could benefit from more attention.)  

• Impact on Professional Identity: You shared that cognitive comorbidities like brain fog and memory loss directly threaten your careers, making it difficult to retain new knowledge and fully apply and demonstrate your expertise. 
• The Medication “Cycle:” A major concern you expressed might be summarized as “more conditions mean more medications and complications.” You said that dealing with issues that accompany narcolepsy and IH—such as hypertension or anxiety—requires management of a revolving door of additional medications and their side effects. 
• Systemic Navigation Burdens: Patients expressed that the combination of narcolepsy and IH with comorbidities creates logistical demands—such as insurance claims, SNAP applications, and legal advocacy—that are nearly impossible to manage without dedicated support.

In short, managing comorbidities is a very high priority for you.Your responses align with a strong sense from our interactions with the community that the impact of your main condition alone cannot easily be separated from the effects of the other medical issues that accompany it.

What’s Next With These Results

Narcolepsy Network – or any organization, not least a not-for-profit –  naturally cannot pursue every initiative it would like.

That said, the preferences and priorities you expressed in these survey results will be among the touchstones for us as we move ahead into 2026 and the years beyond. They will help to guide us in deciding where to begin new programs or to ratchet up those we already do. Or, at minimum, help to ensure our editorial calendar is aligned with your priorities.

A survey is, of course, a limited resource that should serve as the beginning of a dialogue, not the end of one. With that in mind, we’ll continue reaching out from time to time about our priorities, to gain greater or newer insight into what is most and least important to you.

In that same spirit, at any time we invite you to reach out to [email protected] with your thoughts and suggestions. Thanks again for your interest in, and support of, Narcolepsy Network.