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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. The first one is on Monday 16th of November. If you would like to attend please email livingwithih@hypersomnolenceaustralia.org.au and let us know what meeting you are interested in. 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.  If you are a parent who has a child diagnosed with IH, you are welcome to attend our meetings. However, if your child is over eighteen years of age their consent will be required prior to your attendance.

LWIH support groups will be run regularly: 3rd  Monday every month 4pm – AWST 6pm* - AEST 8pm – NZ time 3rd Friday of every month 10:30am – AWST 12.20pm* - AEST 2:30pm – NZ time *NSW & VIC add an hour during daylight savings. If you would like to attend one of our support group 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 of specific challenges, they can also be an important way to gain socialisation and understanding from those who are experiencing similar challenges.  For this reason, it is imperative that Hypersomnolence Australia provides a safe empowering space for all attendees with a clear purpose and guidelines to ensure the aims of support groups align. The information outlined in our Guidelines has been developed to outline the purpose of peer support groups and the guidelines for attendance and participation for attendees’ reference. All attendees will be asked to read this document before joining 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 and for people living in the EMEA region (Europe/UK, Middle East and Africa) please contact Matt Baker at hypersomnolenceuk@gmail.com. You can find information about times and dates of their meetings on the Idiopathic Hypersomnia Awareness Week social media. 

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