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IH Awareness Social Media Tool Kit here
View and download a copy of the IH Awareness Week Idiopathic Hypersomnia Factsheet
Share this page to help raise awareness:
Idiopathic Hypersomnia Awareness Week (IH Awareness Week), 1–7 June, champions global awareness and understanding of Idiopathic Hypersomnia (IH). It empowers the IH community to share their experiences and elevates their voices.
Hypersomnolence Australia first launched the IH Awareness Week in 2013. Since its inception, the IH Awareness Week has united the IH community across 15 countries, fostering awareness and promoting education about IH. The IH Awareness Week has translated awareness infographics into 13 different languages.
IH Awareness Week is collaborating with IH Day, led by the Hypersomnia Foundation. The IH Awareness Week will start with the IH Day on June 1st and conclude on June 7th, 2024. We are grateful to be partnering with the Hypersomnia Foundation.
Together, we hope this collaborative action will accelerate the diagnosis process, advance research to find the cause and reduce stigma.
The Idiopathic Hypersomnia Awareness Week® is a global collaborative event. If there are any individuals or organisations that would like to get involved or share their ideas, please contact us at ihaweek@gmail.com
The Idiopathic Hypersomnia Awareness Week®’s social media is the central hub for the IHAW so make sure to "like" our Facebook page, and follow us on X (Twitter) and Instagram.
WAYS TO PARTICIPATE
CHANGE YOUR FACEBOOK PROFILE PIC
SHARE INFORMATION GRAPHICS ON SOCIAL MEDIA
Scroll down - we have posters in 13 languages!
Also check out the IH Awareness Social Media Tool Kit here
View and download a copy of our Idiopathic Hypersomnia Factsheet
Worldwide Idiopathic Hypersomnia Awareness Week Living with IH Project.
Raising awareness plays a crucial role in bringing attention to Idiopathic Hypersomnia (IH) and the difficulties faced by individuals living with IH.
One of the first challenges for someone with IH is often the length of time to diagnosis. Research has shown the diagnostic process can take anywhere from 10-15 years, and in some cases, even longer.
But it's not always the length of time of the diagnostic journey but the period of time without a diagnosis that can greatly impact an individual’s life. For instance, a 5-year delay in diagnosis could mean that someone with IH spends most of their teenage years - which are critical education and development years, without validation or access to necessary care and treatment. This delay can have far reaching consequences.
Learn more about the IHAW Living with IH Project and how you can get involved here
SHARE YOUR STORY
Sharing your experiences not only helps to raise awareness and educate others it can also be empowering and can help light the way for those who are walking a similar path.
Send your stories to ihaweek@gmail.com.
We know that writing about your experiences can be overwhelming. If you don't know where to start or would like help with your story please let us know.
You can also find inspiration from the many other stories and perspectives we have shared on our Living With IH page.
Feel free to send us your story in your own language!
We have a range of TShirt and Mug designs. An example of them can be found in HA's Store.
We have processed custom orders for people all over the world so if you do not live in Australia and you would like to buy one of our TShirts or Mugs please email us at: info@hypersomnolenceaustralia.org.au
Please DO NOT order via HA'S Store.
Let us know what you would like to order and what country you are in. We will reply with a size chart, a price in your currency* and details for payment. Payment is made via a secure PayPal link.
*Re: price, TShirts are generally $28US and Mugs are $23US.
This price includes all shipping costs.
NOTE: Because we are unable to buy in bulk (we do not sell enough of them) we DO NOT make any money from these items. We sell them purely to help raise awareness.
LOOKING FOR YOUR LOCAL COMMUNITY?
There are online Living with IH Community Groups in the USA, Canada, Australia/NZ and the EMEA (Europe/UK, Middle East and Africa)*. Meetings are held every month via Google Meet or other similar video conferencing.
The aim of the meetings is to provide people diagnosed with Idiopathic Hypersomnia (IH) with a local community where they can offer and receive peer support and to assist with the isolation that many people with IH experience. Living with IH community groups are an informal monthly catch up where people diagnosed with IH can feel relaxed among others that truly do know what it is like living with IH.
See below for contact details of the LWIH community in your country/region.
*If you live outside of the USA, Canada or Australia/NZ please feel free to join the EMEA group.
Living with IH USA
Megan, Jessica and Addie are the LWIH USA group facilitators. If you live in the US and would like to attend a meeting please reach out via email to hypersomnolenceus@gmail.com for more details. Members of the LWIH USA community group are also welcome to join their Facebook group.
Living with IH EMEA* (Europe/UK, Middle East and Africa)
Matt Baker is the LWIH EMEA group facilitator. If you live in Europe/UK, Middle East or Africa and would like to attend a meeting please reach out via email to hypersomnolenceuk@gmail.com for more details.
You are also welcome to join the Living with IH EMEA Facebook group.
Living with IH Canada
Maryann, Rebecca and Kristin are the LWIH Canada LWIH group facilitators. If you live in Canada and would like to attend a meeting please reach out via email to hypersomnolencecan@gmail.com
Members of the LWIH Canada support group are also welcome to join their Facebook group.
Living with IH Australia/NZ
Living in Australia or NZ and would like to attend a meeting? Please complete this brief form
You can find more information on the support group page of our website. You can also email livingwithih@hypersomnolenceaustralia.org.au
Images to download and share - scroll down to find these posters in various other languages
Click here to download a pdf copy of the poster below.
We are in the process of translating this poster into other languages see below
Explore all of the posters in each language series by clicking the purple images below.
Norwegian
What is Idiopathic Hypersomnia? Hva er idiopatisk hypersomni?
Sleep Drunkenness in Idiopathic Hypersomnia. Søvn Drukkenskap i idiopatisk hypersomni.
IH affects every part of a sufferers life
What is Idiopathic Hypersomnia? Hva er idiopatisk hypersomni?
French
Qu'est-ce que c’est l'hypersomnie idiopathique (HI)? What is Idiopathic Hypersomnia?
Hypersomnie idiopathique: faits sur le traitement Idiopathic Hypersomnia - Facts about Treatment
"La chose la plus difficile que je fais chaque jour est de me réveiller et puis de rester réveillé" Hardest thing I do everyday...
Qu'est-ce que c’est l'hypersomnie idiopathique (HI)? What is Idiopathic Hypersomnia?
Dutch
What is Idiopathic Hypersomnia? Wat is Idiopahtische Hypersomnie?
Sleep Drunkenness in Idiopathic Hypersomnia Slaap dronkenschap bij Idiopathische Hypersomnie
"The hardest thing I do every day" "Het moeilijkste wat ik elke dag doe is wakker worden en wakker blijven."
What is Idiopathic Hypersomnia? Wat is Idiopahtische Hypersomnie?
Polish
What is Idiopathic Hypersomnia Czym Jest Hipersomnia Idiopatyczna (IH)?
Sleep Drunkenness in Idiopathic Hypersomnia Bezwładność Senna w Hipersomnii Idiopatycznej
IDIOPATHIC HYPERSOMNIA CAUSES MORE THAN JUST SLEEPINESS HIPERSOMNIA IDIOPATYCZNA TO NIE TYLKO NADMIERNA SENNOŚĆ
What is Idiopathic Hypersomnia Czym Jest Hipersomnia Idiopatyczna (IH)?
Italian
What is Idiopathic Hypersomnia? Che cos'è l'Ipersonnia idiopatica
Sleep Drunkenness in Idiopathic Hypersomnia. L'ubriachezza del sonno nell'ipersonnia idiopatica
"The hardest thing I do everyday..." "La cosa più difficile che faccio ogni giorno è svegliarmi e rimanere sveglio"
What is Idiopathic Hypersomnia? Che cos'è l'Ipersonnia idiopatica
Click on the image to download a copy of our Top tips for people living with IH in Italian.
German
What is Idiopathic Hypersomnia? Was ist Idiopathische Hypersomnie
Sleep Drunkenness in Idiopathic Hypersomnia. Schlaftrunkenheit bei Idiopathischer Hypersomnie
"The hardest thing I do everyday..." Das schwierigste das ich jeden Tag mache, ist aufzuwachen und wach zu bleiben.
What is Idiopathic Hypersomnia? Was ist Idiopathische Hypersomnie
Click on the image to download a copy of our Top tips for people living with IH in German.
Portuguese
What is Idiopathic Hypersomnia? O que é Hipersonia Idiopática?
Idiopathic Hypersomnia - Facts About Treatment HIPERSONIA IDIOPÁTICA: FATOS SOBRE O TRATAMENTO
"The hardest thing I do every day" "A coisa mais difícil que eu faço todos os dias é acordar e me manter acordado”
What is Idiopathic Hypersomnia? O que é Hipersonia Idiopática?
Finnish
Spanish
What is Idiopathic Hypersomnia? Qué es la Hipersomnia Idiopática?
Idiopathic Hypersomnia - Facts About Treatment HIPERSOMNIA IDIOPÁTICA: TRATAMIENTO
"The hardest thing I do everyday..." ""Lo más difícil que hago todos los días es despertarme y permanecer despierto"
What is Idiopathic Hypersomnia? Qué es la Hipersomnia Idiopática?
Mikä on Idiopaattinen Hypersomnia? What is Idiopathic Hypersomnia?
Idiopaattinen Hypersomnia - Faktoja Hoidosta. Idiopathic Hypersomnia - Facts about Treatment
Kaikkein vaikein asia minkä teen päivittäin on herääminen ja hereillä pysyminen. Hardest thing I do...
Mikä on Idiopaattinen Hypersomnia? What is Idiopathic Hypersomnia?
Indonesian
Hebrew
What is Idiopathic Hypersomnia? Apakah Hipersomnia Idiopatik itu ?
Sleep Drunkenness in Idiopathic Hypersomnia. Mabuk tidur pada Hipersomnia Idiopatik.
Did you know? Tahukah Anda? Penderita Hipersomnia Idiopatik biasanya memiliki kualitas tidur yang lebih baik daripada orang normal ; meskipun waktu tidur mereka lebih dari 10 jam, penderita akan bangun dengan perasaan seperti tidak tidur sama sekali.
What is Idiopathic Hypersomnia? Apakah Hipersomnia Idiopatik itu ?
What is Idiopathic Hypersomnia? מהי היפרסומניה אידיופתית
Sleep Drunkenness in Idiopathic Hypersomnia. שכרות שינה כתסמין במחלה היפרסומניה אידיופתית (IH)
Did you know? הידעת?
What is Idiopathic Hypersomnia? מהי היפרסומניה אידיופתית
Japanese
特発性過眠症とは何でしょうか？ What is Idiopathic Hypersomnia? by Marina Kojima
特発性過眠症とは何でしょうか What is Idiopathic Hypersomnia?
特発性過眠症における睡眠酩酊 Sleep Drunkenness in Idiopathic Hypersomnia
特発性過眠症とは何でしょうか？ What is Idiopathic Hypersomnia? by Marina Kojima
We would like to thank all those in the Idiopathic Hypersomnia community that helped translate our posters.
Dr Makoto Honda - Japanese
Dr Meillyssa Chandra Hutabarat - Indonesian
Tom Helge Rasmussen Uhlen - Norwegian
Dr Andréia Welter - Portuguese (Brazil)
José Silveira and Charo Rey - Spanish
Stav Rokach - Hebrew
Mateusz Zmudzinski - Polish
Emilie Vanhaesendonck - French and Dutch
Marina Kojima - Japanese
Alexandra Katharina Nothnagel - French
Anna Paczulla and Fiona Neumann - German
Valérie Hoch - French
Seline Stokkelaar - Dutch
Milo (HiisikoloART) - Finnish
Feri Ascencion from Narcolepsie België en Nederland - Dutch
Massimo Zenti, Fabio Cecchinato and Patrizia Gianotti Finckler - Italian
If there is a language that you can help us translate our posters into please email us at ihaweek@gmail.com
The Idiopathic Hypersomnia Awareness Week® is a registered Trademark in the United States and Australia and is recognised throughout the world as a significant annual awareness raising event. We are a non-profit organisation that does not receive funding and we do not charge membership. To enable us to continue to host this very important event we need your help!