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The Idiopathic Hypersomnia Awareness Week® is moving to 1-7 June.
And we have some exciting news!

Share this page to help raise awareness:

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 mobilises 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.

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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

Together we hope this collaborative action will accelerate the diagnosis process, advance research to find the cause, and reduce stigma.

Idiopathic Hypersomnia Awareness Week® (IHAW) champions global awareness and understanding of Idiopathic Hypersomnia (IH). It unites the IH community, empowering individuals to share their experiences and elevate their voices.

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

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RIGHT CLICK ON THE IMAGES TO SAVE THEM.
YOU CAN ALSO DOWNLOAD THEM FROM OUR FACEBOOK PAGE.

SHARE INFORMATION GRAPHICS ON SOCIAL MEDIA
Scroll down - we have posters in 13 languages!

Also check out our Living with IH page for more images

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Find us on Facebook, X (Twitter)
and Instagram

  • Facebook
  • Twitter
  • Instagram

View and Download a copy of our Idiopathic Hypersomnia Factsheet
 

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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

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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!

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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 $32US and Mugs are $30US.
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 US
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
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Norwegian
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French
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Dutch
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Polish
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Italian
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Click on the image to download a copy of our Top tips for people living with IH in Italian.

German
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Click on the image to download a copy of our Top tips for people living with IH in German.

Finnish
Spanish
Indonesian
Portuguese
Japanese
Hebrew
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! 

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