The Listening Project
“Narcolepsy Network Debuts The Listening Project to Give Voice to the Diverse Experiences of People Living with Narcolepsy and Idiopathic Hypersomnia”
Read the Official Press Release
August 4, 2025
Opportunities for Community Members to Get Involved
Listening to you, understanding what you share about living with narcolepsy and idiopathic hypersomnia (IH) is the single most important role we play at Narcolepsy Network. We strive to create safe and non-judgemental environments that allow for open dialogue and understanding. Another role is to share and educate on clinical research that brings about new treatments and greater access to these therapies.
In keeping with this mission, today we’re launching The Listening Project to share and elevate your message with the biopharma community. The initiative will provide biopharma companies with unprecedented, equal access to your diverse lived experiences. It will consist of structured, non-promotional sessions designed to deliver new insights to the companies supporting our community.
Inaugural Session: “Living With Narcolepsy Type 1”
On the morning of Friday, October 24, 2025, Narcolepsy Network will host an in-person Listening Session for people living with type 1 Narcolepsy at the Royal Sonesta Hotel in Minneapolis, Minnesota. This Inaugural Session of The Listening Project: “Living with Narcolepsy Type 1” is focused on gaining insights specifically into the experiences of people living with narcolepsy type 1 and associated medical needs. We are honored to be collaborating with Takeda Pharmaceuticals who is sponsoring this session.
With gratefulness and hope,
Amy Kant, Director and Keith Harper, Board President
APPLY to be considered: “Living with Narcolepsy Type 1″*
*Please note this session takes place the morning before the start of the 38th Annual Conference in Minneapolis, Minnesota. Participation in the conference is not required, however if you would plan to attend you can register here.
What makes this session unique?*
We have engaged Cullari Communications Global, a third-party stakeholder relations firm to design and facilitate this session. Narcolepsy Network will manage the application and recruitment process and do this in an egalitarian fashion that is open to the public. Our goal is to engage a diverse group of people living with narcolepsy type 1, including those who haven’t had an opportunity to participate and share.
*Note: This is different from a Patient Focused Drug Development (PPFD) meeting which typically takes place with the Federal Food and Drug Administration.
Why NOW? Why is The Listening Project Important?
After almost 40 years of serving you, we are excited to be looking toward a hopeful future– one with the potential for a new class of therapies. So we asked ourselves, how do we show up at this critical time? The launch of The Listening Project signals a new approach to engaging community voices. Within that role, we maintain clear guardrails between the patient and corporate interests and have established a policy of neutrality (meaning we do not promote or align specifically with one company, clinical trial or product)
What does the application process look like?
Anyone with NT1 may apply. Rest assured. Selection will be based on choosing participants with diverse experiences as well as a cross section of ages, geographies and times to diagnosis.
Are expenses covered?
If you are selected, you will be reimbursed for your travel and a hotel on Thursday, October 23, 2025. Please note your participation which includes your time during the session, is entirely voluntary. It is an opportunity to support your community.
While not required, if you’d also like to attend the 38th Annual Conference, you’ll need to register separately. As a reminder, we offer conference scholarships to assist those in need.
When are the deadlines?
The application process will be open from August 4—September 5, 2025. We will notify everyone no later than September 19, 2025. Please note, consideration will be on a rolling basis, and we encourage early application since there are limited spots available.
For questions, please email us at [email protected]
Takeda is proud to collaborate with Narcolepsy Network and is sponsoring this listening session. Narcolepsy Network has engaged a 3rd party stakeholder engagement firm to manage the project. This session is designed to engage directly with individuals living with Narcolepsy Type 1. Through this session, we hope to gain meaningful insights into the experiences and challenges faced by people with Narcolepsy with the goal of informing and enhancing our collective understanding. We sincerely thank everyone who is open to participating and sharing their experiences.
Cullari Communications Global (CCG) specializes in healthcare communications and stakeholder engagement, with a strong focus on improving the lives of patients. CCG fosters connections between biopharmaceutical companies, patient advocacy groups, healthcare providers, and caregivers. Our goal is to ensure patients have a voice in healthcare decisions, access to information, and the treatments they need.
