Narcolepsy is a neurological sleep condition that causes extreme sleepiness during the day (excessive daytime sleepiness, EDS), where individuals will feel drowsy and fall asleep involuntarily. There may also be other symptoms, such as sleep paralysis (where individuals temporarily cannot move or speak even though they are conscious), cataplexy (sudden brief muscle weakness that is usually triggered by strong emotions) and hallucinations.

Narcolepsy is thought to be due to the brain struggling to regulate sleep–wake cycles. There are two types of narcolepsy: 

• Narcolepsy type 1 – more severe; symptoms include cataplexy. In Type 1, the brain does not produce enough of the signalling molecules (neurotransmitters) orexin A and orexin B that are involved in keeping people awake.  
•  Narcolepsy type 2 – less severe than type 1; does not involve cataplexy or a reduction in the orexin signalling molecules. 

Below on this page is some information about this condition as well as links to useful resources for Australians living with a rare disease.  

Synonyms: Gelineau’s syndrome; Gélineau disease;  hypnolepsy;  narcoleptic syndrome; paroxysmal sleep; Narcolepsy-cataplexy; hypocretin/orexin deficiency syndrome. 

Universal rare disease classifications provide a common language for recording, reporting and monitoring diseases. Please visit the Rare Disease Classifications page for more information about these internationally recognised classifications.

ORPHA: 2073 Narcolepsy type 1 

ORPHA: 83465 Narcolepsy type 2 

ICD-11: 7A20 Narcolepsy 

Rare diseases typically display a high level of symptom complexity. There is often a wide range of symptoms and the symptoms may vary between individuals in terms of its presentation, severity, duration and impact. 

Please speak to your medical team to learn more about the symptoms of this condition. 

Rare diseases are often serious and progressive, exhibiting a high degree of symptom complexity, leading to significant disability. Majority of the estimated two million Australians living with a rare disease meet the Australian Government’s definition for disability (in accordance to the Australian Public Service Commission and Australian Bureau of Statistics), and many experience severe and permanent disability impacts. If you or someone you care for is experiencing disability-related impacts from a rare condition, please speak with a health or disability professional for advice. Information about relevant disability support can be found at the RARE Portal’s Disability Support Information page.

Narcolepsy type 1 is caused by loss of orexin producing neurons, which are specialised neurons (nerve cells) in the hypothalamus, a part of the brain that controls wakefulness and sleep. This results in lower levels of orexin A and B, two main signalling molecules (neurotransmitters) that help to keep people awake. It is not well understood what causes the loss of the orexin neurons, but it is thought that some individuals may be more susceptible (more likely than others) to develop it and it could involve environmental, autoimmune and genetic factors. 

The cause of narcolepsy type 2 is unknown and less understood. 

A timely diagnosis is critical for better patient outcomes, the provision of the best possible care and treatment options, access to services and support, increased reproductive confidence and the ability to participate in clinical trials. 

Please speak to your medical team to learn more about the available diagnostic pathways for this condition. 

Please speak to your medical team to learn more about the possible treatment or management options for your condition. Treatment will depend on an individual’s specific condition and symptoms. It is also important to stay connected to your medical team so that you can be made aware of any upcoming clinical trial opportunities.

Healthcare professionals involved in the care of individuals with RD may include general practitioners (GP), sleep specialists, sleep technicians, clinical geneticists and genetic counsellors. The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here. 

Clinical care for rare diseases often involves a multidisciplinary team of medical, care and support professionals. Please note that the information provided here is as a guide and that RVA does not necessarily monitor or endorse specific clinics or health experts.

For many rare diseases, palliative care services may be relevant and useful. Palliative care services are available for people (adults, children and their families) living with a life-limiting illness and is not only for end-of-life care. It can also help at any stage of illness from diagnosis onwards, and will look different for different people. Palliative care services provide assistance, support, resources and tools to help people manage their illness and the symptoms, ease pain, and improve comfort and quality of life. If this is relevant to you and you wish to find out more information about palliative care and how it can help you, please visit:

• Australian Institute of Health and Welfare: Palliative care Overview
• Australian Government Department of Health, Disability and Ageing: Palliative care
• Palliative Care Australia

If you know of any relevant care guidelines, please let us know via the Contribute page. 

Individuals living with rare diseases may have complex medical issues and disabilities, which are not always visible. It is often useful to refer to their medical history as well as personal information such as a medical card, doctor’s letter, or if available, a rare disease passport, for relevant information.

If you know of any relevant emergency management guidelines or information relevant to emergency care, please let us know via the Contribute page. 

There are specific considerations around participating in rare disease research, including clinical trials. It is important to be mindful of issues such as data privacy, research ethics, consent and differences in research regulations between Australia and other countries. For more information, please visit the RARE Portal’s Considerations for Participating in Health and Medical Research page.

If you are interested in finding clinical trials for your condition, please visit the following websites; however, there may not be any clinical trials available:

• Australian Clinical Trials
• ClinicalTrials.gov

It is best to discuss your interest in research, including clinical trials,  with your medical team to determine suitability and eligibility.

Australian Organisations:

Hypersomnolence Australia 
Website: https://www.hypersomnolenceaustralia.org.au/narcolepsy 

Hypersomnia Australia aims to support the medical community in enhancing their understanding of Idiopathic Hypersomnia and Narcolepsy, and are dedicated to being a strong advocate and to raising awareness and educating others about Idiopathic Hypersomnia and Narcolepsy. Their goal is to not just change the process of diagnosis but also improve the level of care and services available to people post diagnosis. They run support groups for individuals in Australia with Narcolepsy.

Sleep Disorders Australia 
Website: https://www.sleepoz.org.au/narcolepsy 

Sleep Disorders Australia (SDA) is a voluntary Not for Profit Health Promotion Charity that advocates for the needs of people with sleep disorders and raises awareness of sleep disorders and the significance they can have on the lives of those affected by them. They provide information and education with regard to the prevention and treatment of sleep disorders and strive to bring a better understanding of sleep health to the public. 

Please note that RVA does not monitor or endorse each group/organisation’s operational governance and activities. When engaging with a group, please consider the information on the RARE Portal’s Finding Helpful Peer and Community Supports page.

Narcolepsy varies between individuals, and each person’s experience is unique.  

If you would like to share your personal story with RVA, please visit the Rare Voices Australia: Share Your Story page. RVA will consider your story for publishing on our website and inclusion on the RARE Portal.

For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.

People living with a rare disease often face unique challenges such as diagnostic delays, misdiagnoses, limited treatment options, and limited access to rare disease specialists and support. These challenges may impact people’s emotional wellbeing and quality of life. Many find it helpful to seek mental health and wellbeing support to cope with ongoing stress and uncertainty. Connecting with people who have shared experiences through a support group may also be helpful. Information about relevant mental health and wellbeing support can be found at:

• Mental Health and Wellbeing Support for Australians Living with a Rare Disease
• The National and State Services pages underneath the ‘Mental Health’ sections listed

Further information on narcolepsy can be found at: 

• Better Health Channel: Sleep – narcolepsy 
• National Organization for Rare Disorders (NORD): Narcolepsy 

Online Mendelian Inheritance in Man, OMIM^®: # 161400 Narcolepsy 1; NRCLP1 

Orphanet: Narcolepsy type 1 

Orphanet: Narcolepsy type 2 

Human Phenotype Ontology (HPO): Narcolepsy type 1 

Human Phenotype Ontology (HPO): Narcolepsy type 2 

This page has been developed by Rare Voices Australia (RVA)’s RARE Portal team. If you would like to see more information added to this page, please reach out via the Contact form. If you would like to share relevant resources for this condition, please visit the Contribute page. 

If you are aware of any additional information that may benefit stakeholders with an interest in this page, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.