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Living with IH Community Group


Hypersomnolence Australia has created a Living with Idiopathic Hypersomnia Community Group. The aim of the community group is to reduce social isolation among individuals living with Idiopathic Hypersomnia (IH) by providing a safe and empowering forum where they can share their experiences of IH with people they can relate to. Details of the support group Living with IH (LWIH) community groups will be run virtually (via Google Meet). There will be from time to time in person meet ups. Information about these meetings will be posted on our social media and website blog. Both the Neurological & Sleep Associations are "Australasian" therefore our group is open to people living in Australia and New Zealand. The purpose of LWIH community is to provide an environment for people with IH. Therefore, only people with an Idiopathic Hypersomnia diagnosis are permitted to attend our meetings. Exceptions to this rule will be at the discretion of the group facilitators only.


If there is enough interest we will have special meetings that are aimed at parents of children (adults or minors) with IH so parents are encouraged to register their interest in our meetings. We will contact them when meetings relevant to them have been scheduled. If your child is over eighteen years of age their consent will be required prior to your attendance at LWIH meetings.


LWIH support groups will be run regularly: 3rd  Monday every month 4pm – AWST 6pm* - AEST 8pm – NZ time *NSW & VIC add an hour during daylight savings. Would you like to attend one of our group meetings? Step one, read the group guidelines

Step two, fill in our attendee form

​You will only need to read the group guidelines and fill in the attendee form once (prior to your first meeting). Once we have received your completed form you will receive invitations via email prior to each of our meetings. If you would like to attend the meeting please click YES in the RSVP. If you do not want to attend the meeting click 'no' or ignore the invitation. You can request to be removed from the invitation list at any time. Please note: Attendee forms must be received at least 24hrs prior to your first meeting to ensure we have enough time to forward you an invitation. If you have any questions about our meetings please email Michelle at livingwithih@hypersomnolenceaustralia.org.au To ensure the aims of our Living with Idiopathic Hypersomnia community group are met, Hypersomnolence Australia has developed guidelines to outline the purpose of the group and for attendance and participation. All attendees will be asked to read this document and then fill in our attendee form prior to attending their first meeting.

To avoid going over the same topic we have put together a list of frequently asked questions. Please go over this prior to attending your first meeting.

If you are looking for details about our support group in future please go to our SUPPORT GROUP page.


Don't live in Australia or NZ but would like to attend a support group meeting?

We do support other groups. For people in the USA please contact Megan and Jody at hypersomnolenceus@gmail.com, for people living in the EMEA region (Europe/UK, Middle East and Africa) please contact Matt Baker at hypersomnolenceuk@gmail.com and for people living in Canada please contact Jennifer and Katelyn at hypersomnolenceca@gmail.com. You can find information about times and dates of their meetings on the Idiopathic Hypersomnia Awareness Week Facebook page and other social media.

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