Narcolepsy & IH Research Register
Living with Narcolepsy or Idiopathic Hypersomnia (IH) is about more than just symptoms. It affects your job, your relationships, your independence, and your daily routines. But most research still focuses only on the clinical side.
That’s why PWN4PWN created the N Register, a comprehensive, patient-driven data registry where your lived experience becomes part of the research.
Our NapChat community is the heart of PWN4PWN. It’s a safe, ad-free digital space built by and for people with Narcolepsy and IH. Inside, you’ll find virtual events, interest- based discussion groups, and real-time support from people who actually get it.
How sleep disorders affect your career and income
The impact on parenting, pregnancy, or fertility
Transportation challenges and safety concerns
Mental health, relationships, and quality of life
What treatments help and what don’t
Why It Matters
Right now, medical systems and policy decisions are being made without your voice in the room. The N Register ensures your experience is counted, respected, and used to fuel better care, better treatments, and better outcomes.
Your data fuels:
- Research that goes beyond sleep studies
- Advocacy efforts and funding appeals
- Greater understanding from providers and lawmakers
Is It Safe?
Yes. Your information is stored securely and anonymously by Sanford Research’s CoRDS program. You control what you share and can opt out at any time.
Participation is voluntary, private, and designed with patient protection at every step.
Who Can Join?
You can enroll if you are:
- Diagnosed with Narcolepsy Type 1, Type 2, or Idiopathic Hypersomnia
- A caregiver or legal guardian of someone with these conditions
- Willing to share honest information about your experience
The more voices we include, the more powerful the data becomes.
