logo

You are the expert on what it’s like to live with idiopathic hypersomnia

Together we’ll spark better understanding and a new dawn for treatment and care

Thank you for being part of the Illuminate Hypersomnia initiative!

The global idiopathic hypersomnia (IH)  community joined together to shine a light on their experiences to inform  the people who research, develop, and regulate medications to treat IH.  Hear directly from patients and their loved ones about all the ways that IH affects their life and what they are currently doing to treat and manage the condition, as well as what treatment benefits matter most in new therapies being developed by watching the Illuminate Hypersomnia meeting recording.

View the program from the April 11 Illuminate Hypersomnia meeting, including the agenda, speakers, and discussion questions

Illuminate Hypersomnia EL-PFDD Community Information Session

Sleep Consortium hosted the landmark Illuminate Hypersomnia initiative in collaboration with patient advocacy organizations that serve the IH community. A highlight of this initiative is an externally led patient-focused drug development (PFDD) meeting which was held on April 11, 2024 (Eastern Time U.S.). The meeting was streamed live to the public at no cost and is available for on-demand viewing above. 

The Illuminate Hypersomnia meeting was conducted as a parallel effort to FDA’s PFDD initiative to more systematically gather patients’ perspectives on their conditions and available therapies to treat their conditions. The initiative also included a PFDD survey to ensure that this initiative reflects the experiences of as many people with IH as possible. A “voice of the patient” report will summarize the Illuminate Hypersomnia meeting and PFDD survey to serve as an enduring resource for researchers, drug development sponsors, regulators, healthcare professionals, and others. This report will be published in Fall 2024. This initiative is also a way for members of the IH community to learn from and support one another.

Three key parts of the Illuminate Hypersomnia initiative:

meeting

Virtual
EL-PFDD Meeting
April 11, 2024

online survey

Online
Survey

report

Voice of the
Patient Report

Shine YOUR light to Illuminate Hypersomnia

Click the button below and provide your contact information to be informed about Illuminate Hypersomnia meeting report which will be released Fall 2024.

The Illuminate Hypersomnia initiative is designed to inform:

researchers

Researchers

drug developers

Drug Developers

regulators

Regulators

healthcare professionals

Healthcare Professionals

community members

Community Members

Thank you to the organizations who partnered with us to Illuminate Hypersomnia:

(Host organization)

Thank you to these generous sponsors for unrestricted educational grants in support of the Illuminate Hypersomnia initiative:

Alkermes
avadel
centessa
harmony
jazz
takeda logo
zevra

About PFDD and the Illuminate Hypersomnia Initiative

In 2013, the U.S. Food and Drug Administration (FDA) began holding a series of meetings to hear directly from patients, caregivers, advocates, and other key community stakeholders about what it’s like to live with various medical conditions and how well available treatments are meeting patients’ needs. This meeting series, called the “Patient-Focused Drug Development” initiative or PFDD, was immensely beneficial to FDA teams and the agency as a whole. The meeting series was expanded to enable patient organizations to host externally-led PFDD meetings (EL-PFDD meetings) in collaboration with FDA. To date, there have been a total of more than 110 PFDD and EL-PFDD meetings combined; one of the first PFDD meetings was dedicated to narcolepsy.

The IH EL-PFDD meeting was conducted as a parallel effort to FDA’s PFDD initiative. The purpose of the Illuminate Hypersomnia EL-PFDD meeting, like all PFDD meetings, was for FDA staff and researchers and developers of therapies to understand more fully the burdens of living with a particular medical condition and community perspectives on available treatments. At these meetings, patients also describe what they most value in terms of treatment benefits, as well as the risks and side effects they may be willing to tolerate as a tradeoff for the benefits that matter most to them.

An example of how PFDD can benefit people living with IH is to deepen understanding about all the ways in which IH impacts people’s lives. The IH community helped tell the full story of how IH affects an individual’s physical, intellectual, emotional well-being and more. This will help researchers and drug developers target symptoms that pose the greatest burden and better understand what degree of improvement would make a meaningful difference in the lives of people with IH and those around them.