top of page
LWIH & LWN for website.png

Hypersomnolence Australia believes in providing quality support to individuals living with Idiopathic Hypersomnia (IH) and Narcolepsy, and our community groups are a great way to do this. Our groups are a friendly safe environment where members can discuss their challenges and successes as well as share advice, resources, and support. The groups are facilitated by experienced members of the Hypersomnolence Australia team and are designed to reduce social isolation and to provide support and information for people living with IH and Narcolepsy.
 

Details of the community groups

Living with IH (LWIH) and Living with Narcolepsy (LWN) community groups are 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 groups are open to people living in Australia and New Zealand.

The purpose of LWIH and LWN communities is to provide an environment for people with IH and Narcolepsy. Therefore, only people with an Idiopathic Hypersomnia or Narcolepsy diagnosis are permitted to attend our meetings. Exceptions to this rule will be at the discretion of the group facilitators only.

We occasionally have special meetings where we invited the parents of children (adults or minors) with IH or Narcolepsy 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 or LWN meeting.

LIVING WITH IDIOPATHIC HYPERSOMNIA COMMUNITY GROUP

3rd Wednesday of every month 

4.30pm - AWST 

6.30pm* - AEST

8.30pm - NZ Time                                

*Don't forget to add an hour if you live in a state with daylight savings.
 

Would you like to attend our LWIH group meetings?

Step one, read the group guidelines: 


 


Step two, register here:

If you have any questions about our LWIH meetings please email Michelle at livingwithih@hypersomnolenceaustralia.org.au

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

 

LIVING WITH NARCOLEPSY COMMUNITY GROUP

1st Wednesday of every month 

5.30pm - AWST 

7.30pm* - AEST

9.30pm - NZ Time                                

*Don't forget to add an hour if you live in a state with daylight savings.

Would you like to attend our LWN group meetings?


Step one, read the group guidelines: 

 


 

Step two, register here:

 

If you have any questions about our LWN meetings please email us at livingwithnarcolepsy@hypersomnolenceaustralia.org.au
 

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. 

T
o ensure the aims of our Living with Idiopathic Hypersomnia and Narcolepsy community groups are met, Hypersomnolence Australia has developed guidelines to outline the purpose of the groups and for attendance and participation. All attendees are asked to read this document and then fill in the relevant attendee form prior to attending their first meeting.

Living with IH Community Group Attendee Form       

Living with Narcolepsy Community Group Attendee Form

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. 

 

Don't live in Australia or NZ but would like to attend a Living with IH community group meeting? 
We do support other LWIH 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 Maryann, Rebecca, and Kristin at hypersomnolencecan@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. 

With regards to Facebook. We do not have a Facebook support group however we recommend the Idiopathic Hypersomnia Australia Facebook group for people diagnosed with Idiopathic Hypersomnia and the Living with Narcolepsy in Australia group for people diagnosed with Narcolepsy. 

The Living with Narcolepsy in Australia group is specifically for people living in Australia who have been officially diagnosed with Narcolepsy.

The Idiopathic Hypersomnia Australia group is for people living in Australia and New Zealand. The group is for people officially diagnosed with Idiopathic Hypersomnia. The group also welcomes parents of minors (under 18 years of age) who have been diagnosed with IH.
 

Please note:
While there can be some benefits in meeting people in Facebook groups we do recommend caution when participating in Facebook groups for a few reasons. It is important to remember that no one really knows who is participating in a Facebook group so the information shared may not be by someone who actually has the condition or disorder the support group represents. We are aware of a number of instances where people have joined various online hypersomnia
and narcolepsy groups with the intention of selling drugs to vulnerable people. You can read about rogue online drug suppliers here .

 

Also with regards to Idiopathic Hypersomnia, because it is very often confused with “unspecified hypersomnia” (particularly in the United States) and hypersomnia associated with a particular cause eg: sleep apnea, other medical conditions and medications, it is not uncommon to find people in the group who do not actually have Idiopathic Hypersomnia. This causes obvious confusion as well as an environment where people with Idiopathic Hypersomnia don’t feel they relate. The admins of the Idiopathic Hypersomnia Australia Facebook do work hard to ensure that only those diagnosed with Idiopathic Hypersomnia (and parents of minors with IH) join their group however it is important to remember that it is Facebook ie: they really have no way of knowing for sure.

BEWARE OF ONLINE DRUG SUPPLIERS!

bottom of page