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Welcome to
asnavigators

Clinical support for families living with Angelman syndrome

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

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

Timely
diagnosis

A high
standard of care

Support
for family

Equipping local
health providers

We’re here for you

Our clinics are based in Melbourne, Sydney and Brisbane
but we provide support to families and clinicians across Australia.

Angelman syndrome families

Angelman syndrome families

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.

asnavigators helps you find the support you need for your loved one, in an easy and coordinated way.

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Healthcare professionals

Healthcare professionals

Angelman syndrome affects approximately
1 in 15,000 live births, so you may not have had a patient with Angelman syndrome before.

asnavigators connects you to specialised clinicians from around Australia, so you can provide the very best care for your patient.

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

Meet our team

asnavigators are clinical nurses with a wealth of experience of working with families with Angelman syndrome. asnavigators are supported by leading Angelman syndrome clinicians from around the world, specialising in a multitude of disciplines.

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 need lifelong care, close medical supervision and intensive support to assist in symptom management, skill development and inclusion.

Finding that support is not easy – that’s where a skilled navigator comes in.

Our asnavigators link your family to leading Angelman syndrome doctors, who can guide and complement the care you receive from local healthcare providers.

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Angelman syndrome families

My daughter failed to thrive, she had food intolerances, reflux, constipation. Professionals didn’t want to ‘put a label on her’ but it wasn’t until someone finally said ‘Angelman syndrome’ that we were able to understand what we were dealing with and begin to find help.

Angelman syndrome need lifelong care

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.

Here you will be linked to the services and treatments you need

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’re keen to share our extensive knowledge of Angelman syndrome with local clinical teams so that Angelman syndrome families across Australia can benefit from the highest standard of care at the local level.

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 a high standard of local care

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Case consultations
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Referrals
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Clinical 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

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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