Most people are in the dark about what it's like to live with idiopathic hypersomnia (IH).
Announcing the initiative, bringing together members of the global IH community to shine a light on all the ways that IH affects your life and what matters most to you in terms of effectively treating IH.
Hypersomnolence Australia is partnering with the Sleep Consortium and organisations around the world to reach as many people affected by IH as possible – individuals living with IH, their care partners and family members, and those who advocate on their behalf. Together we are inviting members of the IH community to participate in a series of opportunities to inform and shape development of treatments for IH.
A focal point of the Illuminate Hypersomnia initiative is a virtual patient-focused drug development (PFDD) meeting to be held in early 2024. This meeting provides the IH community with a forum to inform staff at the U.S. Food and Drug Administration (FDA), representatives of biopharmaceutical companies, researchers, clinicians, and other key stakeholders about what it’s like to live with IH, what you’re currently doing to treat and manage IH, and what treatment benefits matter most to you.
This is a first-of-its-kind initiative for IH. There will be several ways for your experience to be a beam of light helping cut through the darkness that surrounds IH and highlight unmet medical needs.
The live meeting will be virtual, so people from around the globe can participate from the comfort of home, office, or school – a date and details coming soon.
In early 2024 we will launch a PFDD survey to collect the experience of as many IH community members as possible. This input will help shape the meeting discussion and will be included in the report that follows the meeting.
A “voice of the patient” report will summarize the Illuminate Hypersomnia meeting and PFDD survey to serve as an enduring resource for community members, researchers, drug development sponsors, regulators, healthcare professionals, and others.
There will be informational webinars in advance of the meeting to help everyone feel confident and prepared to participate.
Home base for news about the initiative and updates is a new web page – bit.ly/illuminate-IH. Stay informed by clicking here to share your contact information.* You’ll receive a “save the date” announcement (as soon as a meeting date and time is set), an alert about the survey launch in early 2024, and news about other ways to participate and help spread the word.
Your voice – and your light – are essential to illuminate hypersomnia and lead the way to improved treatment and care.
*Your contact information will be used by the Sleep Consortium to keep you informed about the Illuminate Hypersomnia initiative.
UPDATE:
Mark your calendar for April 12, 2024 (2:00 am-6 am AEST) for a first-of-its-kind opportunity for members of the idiopathic hypersomnia (IH) community to express their experiences, needs, and treatment priorities directly to staff from the U.S. Food and Drug Administration (FDA), biopharmaceutical companies investing in IH therapies, research institutions, and healthcare clinics.
The Illuminate Hypersomnia meeting, known as an “externally led patient focused drug development meeting,” is a collaboration of Hypersomnolence Australia with Sleep Consortium and other sleep-related patient advocacy organizations across the world. It will be virtual, streamed live for free, and a recording will be available immediately for on-demand viewing.
Learn more about the Illuminate Hypersomnia initiative, the partnering organizations and sponsors, and how you can stay informed and get involved through this press release, issued today (8 Dec 2023):
https://prn.to/3RbqHBt Further update:
Shine YOUR light to illuminate what it’s like to live with hypersomnia! Share your experiences with idiopathic hypersomnia (IH) by taking the Illuminate Hypersomnia survey: https://bit.ly/IH-survey.
