Newly Diagnosed

A new diagnosis of Angelman Syndrome can be an extremely stressful and uncertain time for families. The Angelman family will support you in difficult times and celebrate your hard-earned wins. We share a common vision, that soon there can be a cure for all ages. Share to help raise awareness on the importance of community. International Angelman Day is celebrated annually on February 15.

Diagnosis day brings a flood of questions. Have no fear. You are now part of a network of parents, researchers, clinicians, and other professionals who are committed to Cure Angelman Now. Here you will find a supportive community, answers to each of your questions, and a wealth of resources to help you manage your child’s daily needs.

We answer phone number at the bottom of this page at all reasonable hours of the day and night and are happy to talk with you about the research into Angelman syndrome as well as our lived experiences as Angelman parents. We can also connect you with others who might be in similar situations – you do not have to do this alone.

There are numerous ways to link into the community and get involved.

Make sure you subscribe to FAST newsletters to stay up to date with fantastic events happening across Australia. Connect to social media using the icons at the bottom right of this page, and apply to join the Australian community closed page for Australian parents only here.

asNavigators

asNavigators is a FAST Australia funded support and care-navigation network that connects Angelman syndrome families and their local healthcare teams with leading Australian Angelman syndrome clinicians. Clinics are based in

Melbourne, Sydney and Brisbane.

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).

Elle, the nurse based at Sydney Childrens Hospital developed a beautiful resources for newly diagnosed familes, you can get it from the asNavigators website here.

Visit the asNavigators website

Join the Global Angelman Syndrome Registry

The Global Angelman Syndrome Registry (GASR) is a FAST Australia-funded initiative designed to bring families, clinicians, researchers, and pharmaceutical companies together to better understand Angelman syndrome. By contributing data, you are helping to shape the future of research, accelerate clinical trial readiness, and ensure families can access potential treatments faster.

In Australia, the registry provides critical insights into our community, strengthening our ability to

advocate for better care, resources, and opportunities. Being counted matters—every entry helps build a clearer picture of Angelman syndrome and drives meaningful progress.

Other resources

Rare Voices Australia (RVA)~ RVA is Australia’s national organisation advocating for those who live with a rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia. RVA are the unified voice of ALL Australians living with a rare disease. An estimated 6-8% of the total population of Australia are affected by rare diseases.

Epilepsy Australia ~ Epilepsy Australia is the national coalition of Australian epilepsy organisations working together to keep our communities informed on the latest medical breakthroughs, social research, publications, news and policy about epilepsy. Their vision is for inclusive communities where people with epilepsy can live and participate free of stigma and discrimination. Find your state organisation here.

NDIS - An individual diagnosed with Angelman syndrome is eligible for the National Disability Insurance Scheme for funding to access to therapies and services like respite as well as equipment. The Angelman Syndrome Association Australia have developed some amazing resources to assist with navigating this process and you can contact them using the details above.

If you, or someone you know, need to speak with someone please contact Beyond Blue.

Newly Diagnosed

asNavigators

National Angelman Association

Join the Global Angelman Syndrome Registry

Other resources