Hypersomnolence Australia

Awesome to see this collaboration between our organisations, Hypersomnolence Australia, and the Hypersomnia Foundation. We are excited for the future.

Join us for the 12th annual worldwide Idiopathic Hypersomnia Awareness Week! To make participation as simple as possible we have prepared a social media toolkit. Here you will find information about the IH Awareness Week and various graphics and suggested words for your posts. https://bit.ly/3wdysR2 Idiopathic Hypersomnia Awareness Week 1-7 June #IdiopathicHypersomnia #LivingwithIH #ThisisIH #IdiopathicHypersomnia #IdiopathicHypersomniaAwareness #IdiopathicHypersomnolence #IHAwarenessWeek

We heard from so many of you living with IH and your care partners at the April 11 Illuminate Hypersomnia meeting. The community came together and shed light on what it’s like to live with IH. View the recording from the EL-PFDD meeting at bit.ly/illuminate-IH. The quest to illuminate hypersomnia continues. By May 11, add your voice to those we have heard from so far by responding to the survey, completing your survey response, or submitting a written comment. Learn more at bit.ly/illuminate-IH. #IHPFDD #IlluminateIH #idiopathichypersomnia #livingwithIH #livingwithidiopathichypersomnia #idiopathichypersomnolence #PFDD #patientfocused #sleepconsortium #thisisIH @hypersomnia-foundation, @project-sleep, @anne-marie-morse, @pwn4pwn, @day4naps @hypersomnolence-australia

💡 Illuminate what it’s like to live with IH! Hypersomnolence Australia is partnering with Sleep Consortium, Inc. and organisations around the world to Illuminate Hypersomnia. This landmark initiative will bring members of the global IH community together to shine a light on the lived experience of IH and what matters most to people living with IH for effective treatment. JOIN IN ON APRIL 12 from 2:00 am-6 am AEST (Australian Eastern Standard time). On April 12 (it will be April 11 in the USA*), the Illuminate Hypersomnia virtual externally-led patient-focused drug development (EL-PFDD) meeting will showcase the experiences of people living with IH. The meeting program is now LIVE at bit.ly/illuminate-IH. It features select survey data based on 446 responses. As a member of the IH community, you’ll have a chance to make your voice heard during the meeting. Participate in advance by responding to the survey and share your experiences during the meeting by calling or writing in. Share 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. RSVP today at bit.ly/illuminate-IH. *For our followers in the US please note it is APRIL 11 from 12:00 noon - 4:00pm EDT. #IHPFDD #IlluminateIH #idiopathichypersomnia #livingwithIH #livingwithidiopathichypersomnia #idiopathichypersomnolence #PFDD #patientfocused #sleepconsortium Hypersomnia Foundation , Project Sleep, Anne Marie Morse, PWN4PWN, Day4NAPs

Have you taken the survey? It’s not too late! 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. Illuminate Hypersomnia brings together global members of the IH community – people living with and caring for someone with idiopathic hypersomnia. Join in today! The anonymous survey will take about 45 minutes to complete, depending on how much detail you share through multiple-choice and open-text responses. It has a “save and continue later” option if you need a break at any point. Learn more about the survey at https://lnkd.in/ei725qjN. #IlluminateIH #idiopathichypersomnia #livingwithIH #livingwithidiopathichypersomnia #idiopathichypersomnolence #PFDD #ELPFDD #patientfocused #sleepconsortium

Hypersomnolence Australia and the Hypersomnia Foundation are coming together to spread awareness about idiopathic hypersomnia (IH). Idiopathic Hypersomnia Awareness Week (IHAW) is collaborating with Idiopathic Hypersomnia Day (IH Day). The IHAW will start with the IH Day on June 1st and will conclude on June 7th 2024. We are grateful to be partnering with the Hypersomnia Foundation in our joint efforts to inform and acknowledge idiopathic hypersomnia (IH) on a global scale. IH Day and IHAW mobilizes the IH community to raise awareness, educate, and uplift the voices of those living with idiopathic hypersomnia. Hypersomnolence Australia first launched the IHAW in 2013. Since its inception, IHAW has united the IH community across 15 countries, fostering awareness and promoting education about IH. The IHAW has translated awareness infographics into 13 different languages. Together we hope this collaborative action will accelerate the diagnosis process, advance research to find the cause, and reduce stigma. To participate in Idiopathic Hypersomnia Awareness Week go to https://lnkd.in/gmamwXmG. To participate in the IH Day go to https://lnkd.in/gRAU_XkK for more information. #livingwithih #thisisih #idiopathichypersomnia #idiopathichypersomniaawareness #sleepinertia #whatisih #idiopathichypersomnolence

Catch up on all the latest NEWS: https://lnkd.in/gH79iWJt #IdiopathicHypersomnia #LivingwithIH #narcolepsy #LivingwithNarcolepsy

Our founder and Director Michelle Chadwick at Sleep DownUnder 2023. This is what progress looks like! From literally nothing when Hypersomnolence Australia started in 2013 to an unprecedented amount of activity with regard to Idiopathic Hypersomnia (IH) at this years Sleep DownUnder conference including this presentation. Kudos to Michelle and all the researchers that have contributed to work involving IH! HA holds the only patient registry of people diagnosed with Idiopathic Hypersomnia in Australia. Learn more here: https://lnkd.in/gc-ZcrP6

Illuminate what it’s like to live with Idiopathic Hypersomnia! Hypersomnolence Australia is partnering with @Sleep_Consortium and organizations around the world to Illuminate Hypersomnia. This landmark initiative will bring members of the global IH community together to shine a light on the lived experience of IH and what matters most to people living with IH for effective treatment. A focal point of the Illuminate Hypersomnia initiative is a virtual patient-focused drug development (PFDD) meeting to be held in April 2024 where people living with IH are the experts. There will be opportunities to share 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. Sign up today to receive updates about the meeting date, a companion survey in advance of the meeting, and other events coming in early 2024! Learn more: bit.ly/illuminate-IH Sign up for updates: bit.ly/IH-up2date #IlluminateIH #idiopathichypersomnia #livingwithIH #livingwithidiopathichypersomnia #idiopathichypersomnolence #PFDD #patientfocused #sleepconsortium @hypersomnia-foundation, @project-sleep, @anne-marie-morse, @pwn4pwn, @day4naps @hypersomnolence-australia