Announcing

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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

Your experience living with idiopathic hypersomnia (IH) is of vital interest to the people who research, develop, and regulate medications to treat IH. The Illuminate Hypersomnia initiative will bring together members of the global IH community to shine a light on all the ways that IH affects your life and what you’re currently doing to treat and manage the condition, as well as what treatment benefits matter most to you in new therapies being developed.

The Illuminate Hypersomnia initiative is designed to inform:

researchers

Researchers

drug developers

Drug Developers

regulators

Regulators

healthcare professionals

Healthcare Professionals

community members

Community Members

Sleep Consortium is hosting this landmark 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 to be held on April 11, 2024, from 12:00 noon-4:00 p.m. (Eastern Time U.S.). The meeting will be streamed live at no cost and will be immediately available for on-demand viewing. Sign up to receive updates about meeting registration and other details. View a press release raising broad awareness about IH and the initiative.

The Illuminate Hypersomnia meeting is being 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. In addition, the initiative will also include 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 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

The Illuminate Hypersomnia survey aims to gather insights into the experiences of those affected by IH, including their diagnostic journeys, what it’s like to live with IH, and views on current and future treatments. Learn more about the survey or begin now by clicking the button below.

Click the button below and provide your contact information to stay informed about the latest news on this first-of-its-kind effort to tell the full story about what it’s like to live with IH. You’ll receive an alert about the survey launch and updates about other ways to participate and help spread the word.

Organizations Partnering 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 is being conducted as a parallel effort to FDA’s PFDD initiative. The purpose of the Illuminate Hypersomnia EL-PFDD meeting, like all PFDD meetings, is 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. You can help us tell the story fully of how it 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.