Links & Resources

Links to other Angelman Syndrome Resources

Australian Government Department of Human Services: Disability information Visit the website below for information on: Child Disability Assistance Payment; Continence Aids Payment Scheme; Disability Support Pension; Mobility Allowance; Rent Assistance; Sickness Allowance; Telephone Allowance; Youth Disability Supplement. Website: http://www.humanservices.gov.au/customer/themes/people-with-a-disability
 

Communication and AAC
Download the PDF file here: Core Words Booklist.
Team approach to successful AAC implementation: A Therapist  and Parent Perspective. Watch video here

Interactive Planner for Caregivers

Recently, a resource was created that helps assist caregivers and families with planning and recording their special needs child's daily schedule. Features allow users to record medication prescribed, meals, emergency contacts, games, and other daily routines. The planner can be printed and provided to caregivers and families once its filled out. Website: http://planner.thecplawyer.com/

Disability Online Australia’s disability hub: Contact details for all State Disability organisations, aids and equipment. Website: www.disabilityonline.org.au 
 

Epilepsy Australia: Epilepsy Australia Ltd (ABN 14 097 003 382) is a not-for-profit organization and a nationally registered charity and is committed to improving the quality of life for every Australian living with epilepsy and other seizure disorders. Website: http://www.epilepsyaustralia.net
 

Epilepsy Action Australia: Beginning in 1952 as a local association, Epilepsy Action Australia has developed into the largest provider of specialist epilepsy services in the community for people with epilepsy and other seizure disorders, their carers, families and the broader community. Website: www.epilepsy.org.au 
 

Seizure Tracking: SeizureTracker.com is dedicated to providing people living with epilepsy and their doctors with free comprehensive tools to help understand relationships between seizure activity and anti-epileptic medications. Website: https://www.seizuretracker.com
 

Carers Australia: Carers information and registration information on Better Start programme. Carers Australia is the peak national body representing Australia’s carers. We take a leadership role and respond to carers' needs and those of the people they care for, being mindful of their financial challenges and in many cases, lack of social inclusion. Website: www.carersaustralia.com.au
 

Better Start: The Better Start for Children with Disability initiative provides funding for early intervention services. Children are eligible for the Better Start program if diagnosed with one of the following disabilities: Cerebral palsy; Deafblindness; Down syndrome, including mosaic Down syndrome; Fragile X syndrome with full mutation; Hearing impairment; Sight impairment; Prader-Willi syndrome; Williams syndrome; Angelman syndrome; Kabuki syndrome; Smith-Magenis syndrome; CHARGE syndrome; Cornelia de Lange syndrome; Cri du Chat syndrome; or Microcephaly. Website: www.betterstart.net.au
 

National Respite for Carers Programme: The National Respite for Carers Program is one of several initiatives designed to support and assist relatives and friends caring at home for people who are unable to care for themselves because of disability or frailty. Website: http://www.health.gov.au/internet/main/publishing.nsf/Content/annual-report-1213-toc~12-13-2~12-13-2-1~12-13-4 
 

Chronic Illness: This website contains information about the Chronic Illness Alliance Incorporated, its member organisations and resources for people living with a chronic illness. Website: http://www.chronicillness.org.au
 

Raising Children: Australian Parenting website with section on special needs. Disability Services Pathfinder for all States and Territories. This is a website for Australian mothers, fathers, grandparents and anyone else who has responsibility for the care of children. We aim to meet the information needs of a wide range of users, including those who are just curious, those who are looking for assistance with particular problems or issues, and the users who want to explore the science behind modern thinking on the care of children. Website: http://raisingchildren.net.au/philosophy/philosophy.html

Further Inform Neurogenetic Disorders (FIND): This website summarises findings from high quality research studies into genetic syndromes. This website was built by the Cerebra Centre for Neurodevelopmental Disorders in partnership with Cerebra, Economic and Social Research Council and syndrome support groups to reduce the amount of time it takes research findings to reach parents, carers and professionals – the people who need the information the most. http://www.findresources.co.uk/the-syndromes/angelman/key-facts
 

ASA Queensland: Queensland Angelman syndrome Website. Website: www.angelmansyndromeqld.org Contact: Lysandra Warren - warren.lysandra@gmail.com
 

ASA Western Australia: Western Australian Angelman syndrome Website. Website: www.angelmanwa.com.au Contact: Leticia Grant - maygrant@tpg.com.au
 

FAST: The Foundation for Angelman Syndrome Therapeutics Australia (FAST Australia) http://www.cureangelman.org.au/

A-BOM: The Angelman Biomarkers and Outcome Measures Alliance. (the A-BOM) is a new group formed by both FAST and ASF, together with researchers and pharmaceutical corporations to help move new treatments to the clinical trial phase. http://www.angelmanbiomarkers.org
Facebook: https://www.facebook.com/AngelmanBiomark Twitter: https://twitter.com/AngelmanBiomark (@angelmanbiomark)
 

Argentina: Casa Angelman – www.casaangelman.org
 

Austria: Angelman Verein Osterreich: www.angelman.at
 

Belgium: Angelman Syndrome Belgium: http://www.angelmansyndroom.be/ https://twitter.com/angelmanSB https://www.facebook.com/#!/Angelmansyndroom
 

Brasil: Comunidade Sindrome de Angelman – www.acsa.org.br
 

Canadian Angelman Syndrome Society (CASA): Website: www.angelmancanada.org Email: info@AngelmanCanada.org To educate concerned families, the medical and educational communities, the general public, and other interested organizations and individuals on the diagnosis, treatment, management and prevention of the handicapping conditions associated with Angelman Syndrome.
 

Denmark: Angelmanforeningen i Danmark Website: http://www.angelmanforening.dk Email: lenesommer@kongpetsak.dk
 

FAST: The Foundation for Angelman Syndrome Therapeutics (FAST USA) http://www.cureangelman.org/
 

Finland: Suomen Angelman-yhdistys (SAY), Finnish Angelman Syndrome Society (FASS) Website: http://www.angelman.fi Email: tuija.kaivanto@angelman.fi International contact: Tuija trench - tuija.kaivanto@angelman.fi
 

France: Association Francophone du Syndrome d'Angelman (AFSA) Website: http://www.angelman-afsa.org Email: presidence@angelman-afsa.org International contact: presidence@angelman-afsa.org
 

Germany: Angelman Website: http://www.angelman.de Email: Bodo.Gerlach@angelman.de International contact: Bodo Gerlach - Bodo.Gerlach@angelman.de
 

Ireland: Irish Angelman Website: http://www.angelman.ie Email: Rosemary Teggin - rosemaryteggin@eircom.net
 

Israel: Irgun Mispachot Angelman (IMA) Website: http://www.angelman.co.il Email: satlow@ndsisrael.com International contact: Shabtai Atlow - satlow@ndsisrael.com
 

Italy: Organizzazione Sindrome di Angelman (O.R.S.A.) Website: http://www.sindromediangelman.org Email: orsa@sindromediangelman.org International contact: Carlo Grilli - orsa@sindromediangelman.org
 

Japan: Angelman blogsite – www5f.biglobe.ne.jp/~angel-no-kai
 

Mexico: Angelman Syndrome Mexico - Facebook: https://www.facebook.com/sindromengelmanmex Email: Marina Cardoso marinacardoso@terra.com.mx
 

New Zealand: New Zealand Angelman Network - www.angelmannetwork.com
 

Norway: Norsk Forening for Angelmans Syndrom – http://www.angelman.no
 

Philippines: Angelman Syndrome Philippines – Facebook page (no national association currently)
 

Spain: Asociación Síndrome Angelman de España (A.S.A.) https://www.facebook.com/ASA-ASOCIACION-SINDROME-DE-ANGELMAN-ESPA%C3%91A-119910304753295 (facebook page)
 

Sweden: Swedish Angelman Syndrome, Angelmans Syndrom Föräldrarförening (ASF), Kyrkotorp 6304, SE-434 96 Kungsbacka, E-mail: annette.lack.fk@metall.se
 

The Netherlands: Dutch Angelman Syndroom Association Prader-Willi / Angelman Vereniging Website: www.angelmansyndroom.nl Email: werkgroep@angelmansyndroom.nl International contact: Tamara Stranders - T.Stranders@fvo.nl
 

Turkey: Angleman Sendromu Türkiye – Angelman Sendromu (Facebook page)
 

United Kingdom: Angelman Syndrome Support, Education and Reseach Trust (ASSERT) Website: http://www.angelmanuk.org Email: contact@angelmanuk.org International contact: HJ (Jim) Brennan - jim.brennan@whsmith.co.uk
 

Uruguay: SINDROME DE ANGELMAN EN URUGUAY – National Association Facebook page
 

USA: Angelman Syndrome Foundation (ASF) Website: http://www.angelman.org Email: info@angelman.org International contact: info@angelman.org


Contacts in Countries with no National Associations:
 

Egypt: Amira Khalifa - akhalifa@idsc.net.eg

Poland: Janusz Rozalski - rettsyndrom@pf.pl

 

First Point of Contact​

Contact your State Representative here

If for some reason you are unable to get through, contact our National President or National Vice President here

Visit the GiveNow Website

Our Mission

The ASAA was established to support, inform, educate, network, promote research and to advocate for families affected by Angelman syndrome - read more


© 2005 - 2018 Angelman Syndrome Association Australia. All Rights Reserved.

  • s-facebook
  • Twitter Metallic

PROUDLY COLLABORATING WITH FAST AUSTRALIA 

FAST Australia
The Foundation for Angelman Syndrome Therapeutics Australia (FAST Australia) is an organisation of families and professionals dedicated to funding research to provide treatments that will improve the symptoms of Angelman syndrome and ultimately that will provide a cure (see website).