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Living with IH Support Group Meetings


We asked you and you told us what you wanted. Hypersomnolence Australia has now created ongoing support meetings. If you would like to attend please to go: https://www.hypersomnolenceaustralia.org.au/supportgroup to learn more. Hypersomnolence Australia aims to provide individuals living with Idiopathic Hypersomnia (IH) a safe and empowering forum to share their experiences of IH with people they can relate to with the aim of lessening social isolation. To ensure that our meetings are both supportive and informative from time to time we will also arrange special meetings that are attended by allied health care professionals (and other professionals if possible) who will speak on a range of relevant topics. Details of these meetings will be posted on our Support Group page and on our social media (Facebook, Twitter and Instagram). Details of the support group To lessen the barriers for individuals with IH to engage with other people they can relate to Living with IH (LWIH) support groups will be run virtually (via Google Meet). Both the Neurological & Sleep Associations are "Australasian" therefore our group is open to people living in Australia and New Zealand. To ensure the LWIH support group’s purpose is achieved individuals must have an idiopathic hypersomnia diagnosis. Exceptions to this rule will be at the discretion of the group facilitators only.  We will from time to time 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 Toni and Michelle at livingwithih@hypersomnolenceaustralia.org.au IMPORTANT INFORMATION ABOUT OUR SUPPORT GROUP

It is important to understand the difference between support groups and other groups that may gather. Many groups may gather for therapeutic reasons or professional reasons and are usually facilitated by a professional. A peer support meeting is usually facilitated by individuals that are also experiencing the same challenge as the attendees of the group. Peer support groups are not created to provide therapeutic or professional information for attendees, and they are purely for support purposes.

Individuals access peer support groups for various reasons. While peer support groups can be a great place to expand your knowledge and understanding, connect with other individuals facing similar challenges, or to feel validated, it is imperative that you have a safe space to do so.

For this reason, and to ensure the aims of our Living with Idiopathic Hypersomnia support 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 LIVING WITH IH 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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