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Living with IH & Narcolepsy Community Groups

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Information and Guidelines for Attendees

Hypersomnolence Australia’s Living with Idiopathic Hypersomnia (LWIH) and Living with Narcolepsy (LWN) community groups bring people together to share conversation, connection, and lived experience. These groups offer a friendly environment where individuals can talk about their daily challenges, exchange ideas, and hear how others navigate life with their condition.
 

The groups provide support and information through shared experience, helping reduce isolation and building a sense of community among people who genuinely understand what living with Idiopathic Hypersomnia (IH) or Narcolepsy is like.
 

The groups are guided by experienced facilitators who help create a comfortable environment where everyone can participate, listen, and feel part of a community.

 

PURPOSE

The aim of the LWIH and LWN community groups is to provide a warm, inclusive space where people living with Idiopathic Hypersomnia or Narcolepsy can:
 

  • connect with others who have similar lived experiences
     

  • share practical ideas and insights
     

  • talk openly in a safe and welcoming environment
     

  • feel part of a supportive community of peers
     

These groups are not clinical sessions or therapy; they are peer-driven spaces grounded in lived experience, understanding, and community.

 

MEETING FORMAT

LWIH and LWN gatherings primarily take place online (via Google Meet). Occasionally, in-person meet-ups may be organised, and any updates will be shared via our website and social media channels.

Both the Neurological & Sleep Associations are "Australasian" therefore our group is open to people living in Australia and New Zealand.​

Meeting Schedule

LIVING WITH IDIOPATHIC HYPERSOMNIA
3rd Wednesday of every month
4:30pm AWST / 6:30pm AEST / 8:30pm NZ

LIVING WITH NARCOLEPSY
1st Wednesday of every month
4:30pm AWST / 6:30pm AEST / 8:30pm NZ

​GUIDELINES FOR ATTENDEES

These guidelines help ensure that everyone feels safe, respected, and able to participate comfortably.
 

1. Eligibility

These community groups are for individuals diagnosed with Idiopathic Hypersomnia or Narcolepsy living in Australia and NZ.

From time to time, we may host special sessions for parents or carers of minors; these will be announced separately.
 

If a parent wishes to attend on behalf of an adult child, the adult child’s consent is required in writing.

 

2. Privacy and Respect

We want everyone to feel confident sharing their lived experience. To protect this:
 

  • Personal stories, experiences, and the identities of attendees should not be shared outside the group.
     

  • Participants must join with their camera on so the group can feel connected. If this is difficult for you, please contact us beforehand.
     

  • Your name should be visible on your screen or in the chat.
     

Everyone in the group should feel heard, respected, and safe.

 

3. Meeting Etiquette
 

  • Please mute yourself when not speaking.
     

  • Recognise that experiences differ — everyone’s situation, symptoms, treatments, and support networks vary.
     

  • Listen with kindness, speak with consideration, and allow space for all voices.
     

  • While people often share what works for them, any medical decisions should always be discussed with your healthcare professional.

 

4. Evidence-Based Discussions

We strongly value the sharing of lived experience — personal stories, reflections, and practical tips are central to the groups and help people feel understood. However, when discussing Idiopathic Hypersomnia or Narcolepsy themselves, such as mechanisms, symptoms, treatments, or “facts” about the conditions, information must be grounded in reliable, evidence-based sources. This means referring to reputable, peer-reviewed scientific literature. This ensures the group remains a trustworthy environment and that questions about IH or Narcolepsy are approached using the best available scientific understanding.

 

5. Registration

All new attendees must register before joining their first meeting.
 

Register here: 
• Living with IH
• Living with Narcolepsy
 

To help reduce repeated questions in LWIH sessions, please review our Frequently Asked Questions here â€‹â€‹before attending your first meeting.

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​If you have any questions about our LWIH or LWN community catch ups please email Michelle at info@hypersomnolenceaustralia.org.au

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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. 
 

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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.

You can find more information about these groups including meeting times and dates etc here. 

Facebook Groups
 

We do not run a Hypersomnolence Australia Facebook support group. Instead, we recommend two independent, peer-led Facebook communities for people who have been formally diagnosed:
 

  • Idiopathic Hypersomnia Australia – for people living in Australia and New Zealand with a confirmed diagnosis of Idiopathic Hypersomnia. The group also welcomes parents of minors (under 18) who have been diagnosed with IH.
     

  • Living with Narcolepsy in Australia – for people living in Australia with an official diagnosis of Narcolepsy.
     

These groups offer opportunities for connection, shared experience, and peer support outside our formal community catch-ups.

 

A note of caution about Facebook groups
 

Facebook groups can be helpful places to meet others, but we encourage people to use them thoughtfully:
 

  • Anonymity and accuracy
    It is not always possible to know who is in a Facebook group or whether they truly have the condition the group represents. Information shared may not always be accurate, up to date, or evidence-based.
     

  • Rogue sellers and unsafe offers
    We are aware of instances where people have joined online hypersomnia and narcolepsy groups specifically to sell medications or other products to vulnerable members. Please be extremely cautious about anyone offering drugs or treatments in these spaces. You can read more about rogue online drug suppliers here.
     

  • Diagnostic uncertainty in IH and Narcolepsy
    Idiopathic Hypersomnia and Narcolepsy are both conditions that are vulnerable to misdiagnosis or confusion with other sleep disorders, medical conditions, or lifestyle factors. This includes cases where people receive an IH or narcolepsy diagnosis that does not ultimately reflect the underlying condition. Because of this, it is not unusual to find individuals in IH or narcolepsy Facebook groups who may not actually have the condition the group represents. This can lead to confusion, misinformation, and discussions that don’t always align with the lived experience of those who do have IH or Narcolepsy.

    While group administrators often work hard to ensure that only appropriately diagnosed individuals join, it is ultimately still Facebook - meaning there is no reliable way to verify each member’s diagnosis or background with certainty.

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