Select a Syndrome or Condition
Activ Foundation. A better life... Parent Portal

Life Events - Diagnosis


Antenatal screening 31/08/2017.

Briefly explains the screening process and diagnostic procedures for Down syndrome and other disorders that may occur during pregnancy.

The Association of Genetic Support of Australasia Inc. 31/08/2017.

Facilitates support for those families affected directly or indirectly by genetic conditions throughout Australasia. Working as a contact point the association has a detailed registry of people who are looking for other people affected by the same condition. A selection of personal stories from people who live with a genetic condition or from family members close to the person are included. A forum link provides the opportunity to share experiences with others. There are links to reputable sites providing information on a wide range of genetic conditions from Australia and around the world.

Child disability resources -- South Australia: Children, Youth and Women's Health Service. Government of South Australia 31/08/2017. 4 p.

This fact sheet provides links to South Australian, Australian and international resources on child disability available on the internet.

Disability Services Commission -- West Perth: 31/08/2017.

The website of the West Australian government department that has responsibility for services to people with disabilities

Family information booklet : an introduction to the Early Childhood Development program -- West Perth: Disability Services Commission 31/08/2017. 20 p.

This booklet provides information for families about the Early Childhood Development (ECD) Program, which provides services to families of children who have Global Developmental Delay with or without a known diagnosis, for example Down syndrome, Autism and Fragile X. The program aims to provide you with support and guidance through your child�s early years, from birth until they enter Year 1, to maximise participation and independence in the local community.

Genetic Support Council WA : supporting individuals and families affected by genetic conditions Genetic Support Council of Western Australia 31/08/2017.

The Genetic Support Council of Western Australia provides genetic support information to families and the general community on their website. There is a comprehensive list of links detailing community support groups that help people with genetic disorders and a calendar of events Australia wide but with a focus on WA. A compiled list of news and current issues inform about research and breakthroughs in genetic conditions. The Council also provides access to current and back issue newsletters which can be downloaded.

Genetic Support Network Victoria -- Victoria: 31/08/2017.

The website of Genetic Support Network Victoria (GSNV) which aims to provide a point of contact for individuals and families affected by genetic conditions who are seeking information and support.

Health Centre for Genetics Education The Centre for Genetics Education 31/08/2017.

Provides current and relevant genetics information to individuals and family members affected by genetic conditions and the professionals who work with them. Sectioned into key topics there is a comprehensive range of factsheets and information sheets on nearly all known genetic conditions. A special section on schools will help teachers find resources and publications to help them in the classroom. The health professionals section provides information on current issues.

National Disability Services (NDS) -- Deakin, ACT: National Disability Services 31/08/2017.

NDS is the national industry association for disability services, representing over 600 not-for-profit organisations. Collectively, members operate several thousand services for Australians with all types of disability. NDS�s members range in size from small support groups to large multi-service organisations, and are located in every State and Territory across Australia. The website includes links to industry events, programs and grants

Raising Children Network. Disability Services Pathfinder Raising Children (Australia) Network 31/08/2017.

The interactive pathfinder can help you find your way through services and support for your child with disability and for your whole family. The pathfinder can help find out: where to start with disability services; what to do to help your child; who to contact, and how; how to plan for the future.

There's no such thing as a silly question : a practical guide for families living with a child with chronic illness, disability, mental illness or a life-threatening condition InterACT 31/08/2017. 128 p.

The aim of this book is to assist parents of children with chronic illness, disability, mental illness, or a life-threatening illness to find their way around the medical and community systems. This book will help parents identify and access the help and support they think is appropriate for them, their child and their family. It also aims to provide insight into how parents can care for themselves and their families at a time when personal resources may be stretched to the limit. There are many resources available that address parenting, care issues and services available to families. PDF available at

Unique. Rare Chromosome Disorder Support Group -- Caterham, Surrey: Unique. Rare Chromosome Disorder Support Group 31/08/2017.

Website of the UK organisation Unique : Rare Chromosome and Disorder Support Group. The site includes links to a free downloadable information leaflets on a large range of chromosome disorders.

Welcome to Holland 31/08/2017.

A classic piece on the emotions involved in parenting a child with a disability.

Welcome to the Association for Children with a Disability Association for Children with a Disability 31/08/2017.

A comprehensive site that provides parents with information and ideas for helping their child with a disability. Includes support resources for fathers, siblings, families at the diagnosis stage and professional development. Provides information on topics such as aids and equipment, early childhood intervention, education, mental health, and vehicle modification. Details the state government policies of Victoria on disability and provides access to links for other support organisations.