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Welcome to
asnavigators

Support for families navigating Angelman syndrome

asnavigators is a support and care-navigation network that connects Angelman syndrome families and their local healthcare teams with leading Australian Angelman syndrome clinicians.

Through asnavigators, families can access navigation support in two ways – through our hospital-based nurse network or via the national Pathways Nurse Service, delivered through a telehealth model by the Centre for Community-Driven Research (CCDR).

Clinical support for families living with Angelman syndrome
Support
for families navigating
Angelman
syndrome

Navigating care for Angelman syndrome

Whether you’re dealing with a new diagnosis or have been handling this for a while, you’ve probably faced a confusing journey with many twists and turns.  Families can access care navigation in two different ways, depending on the type of support they need.

Clinical Nurse Network

There are FAST funded nurses based in Melbourne, Sydney and Brisbane who each work one day a week.

They work alongside hospital clinicians to coordinate care and support families before and after appointments. Families can get in touch directly, and clinicians can refer patients to the clinics for support.

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Refer a Patient

Pathways Nurse Service

Families across Australia can access nurse-led support through the Pathways Nurse Service, delivered nationally by CCDR.

Assisting people of all ages to navigate the broader health and disability system, offering guidance on services, referrals and access options. Families can contact the service directly for help, with no referral required.

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Timely
diagnosis

A high
standard of care

Support
for family

Equipping local
health providers

*This service is not emergency care, we work with families and clinicians to develop treatment plans and support options.

Meet our team

asNavigators nurses are registered nurses who understand the needs of families living with Angelman syndrome. They work alongside health professionals with knowledge of Angelman syndrome across different areas of care.

Meet our team
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Our vision

We share the Foundation for Angelman Syndrome Therapeutics’ (FAST Australia) vision of a world where lives are no longer limited by a diagnosis of Angelman syndrome. Together we can improve the quality of life for individuals with Angelman syndrome through timely diagnosis, access to best practices in care and treatments.

Our role with Angelman syndrome families

Rare conditions are hard to navigate. It can be exhausting, confusing and distressing for families.

Individuals with Angelman syndrome often require lifelong care, regular medical follow-up and ongoing support to help with daily functioning and participation.

Finding the right support can be challenging – that’s where asnavigators can help.

 

 

Angelman syndrome need lifelong care
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Angelman syndrome families

Talking with the nurse helped me feel more confident in caring for my child. They took the time to understand our situation and explained what services were available, which made everything feel far less overwhelming.

Our process - for families

Complete our online enquiry form to request an appointment.

You will need a referral from your GP or specialist.

Check out our patient resources for tools and articles
Attend your appointment, either in person or through telehealth.

Navigators will discuss options and help connect you with relevant services.

Become empowered to navigate Angelman syndrome life with greater confidence
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Our role with local GPs and specialists

Are you a local GP, paediatrician, neurologist or other specialist? Do you have a patient with suspected or confirmed Angelman syndrome?

asnavigators can help you help them.

We share our knowledge of Angelman syndrome with local clinical teams to support high-quality, consistent care for families across Australia.

Because Angelman syndrome is rare, many clinicians have not treated patients before.

Symptoms are diverse. Concerns are usually raised during routine health assessments when a baby or toddler is found to have developmental delay, speech impairment or ataxia but with normal metabolic, hematologic, and chemical laboratory profiles and a structurally normal brain on MRI.

Diagnosis can be difficult. Many children with Angelman syndrome are misdiagnosed with cerebral palsy, autism spectrum disorder or one of several mimicking syndromes.

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Treatment is not always straightforward. However, thanks to the work of many dedicated families and professionals, we now have a multidisciplinary standard of care for Angelman syndrome that guides management and clinical decisions.

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asnavigators equips you to provide consistent, evidence-informed local care

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Case consultations
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Referrals
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Education
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Join the Global Angelman Registry

Have you joined the Global Angelman Registry yet? It’s a invaluable step for all Angelman syndrome families. The Global Angelman Syndrome Registry is a tool for understanding developmental progress, medication and seizure management. With your consent, asnavigators can use the information you provide to help determine your needs for your clinic appointment, saving time during your visit.

Join here

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asNavigators provides general navigation and support information only. External services or clinicians mentioned on this site are shared for awareness and do not represent endorsement, recommendation, or verification. Content is reviewed periodically and may be updated or removed at any time. Information provided should not replace advice from registered health practitioners.

asnavigators acknowledges the Traditional Custodians of country throughout Australia, and we pay our respects to Elders past, present, and emerging. We are committed to honouring Aboriginal and Torres Strait Islander peoples and their unique cultural and spiritual relationship to land, water, and seas and their rich contribution to society.

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