Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
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- Epilepsy
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- Advocacy Toolkit
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- Emma’s Story
- Marrium’s Story
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- Hannah’s Story
- 2022 National Day of Action to #DefendOurNDIS
- Miller’s Story
- 2022 SWAN Virtual Rare Disease Day Event
- Lloyd’s Story
- Books
- Hamish’s Story
- Damian’s Story
- Sonali Johri
- Julia Carpenter
- Julia Carpenter
- Crystal Lina
- Sharon Cox
- Sharon Cox
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- Iam Madden
- Crystal Lina
- Rebecca Christian
- Amelia Riccobono
- Cheryl Hart
- Laura Sundqvist
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- Audrey Buttigieg Cardona
- Chelsea Clark
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- Kayla Beukes
- Tammy Leigh
- Chris Brimble
- Jennifer Soriano
- Veronica Goff
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- SWAN Portraits Exhibition 2022
- SWAN Portraits Exhibitions – The Story Behind the Exhibition
- Podcasts and Interviews
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- SWAN19 – Genetic and Genomics Conference
- SWAN Disability Transition Conference
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- Naomi’s Story
- Heidi May’s Story
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- Daniel’s Story
- Xavier’s Story
- Rebecca’s Story
- Luca’s Story
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Resources
- WES for Rare Disease
- There is more to a diagnosis than a name
- Barriers to care
- Working with industry
- Ambiguous grief – part 2
- Ambiguous grief – part 1
- Advocating for your child’s rights at school
- About SWAN
- A day in the life of not knowing
- FaceMatch — more info
- Some children are not the same
- Your other children
- What is a gene test
- About SWAN
- SWAN – Supporting Siblings
- SWAN – The Diagnostic Pathway
- Genetic and Genomic Testing Explained
- SWAN – About Us
- SWAN – Supporting young children and families early, to reach their full potential
- SWAN – NDIS Planning Policy for Personalised Budgets and Plan Flexibility
- SWAN – Access and Eligibility Policy for Independent Assessments
- GUARD Collaborative – Supporting young children and families early, to reach their full potential
- GUARD Collaborative – NDIS Planning Policy for Personalised Budgets and Plan Flexibility
- GUARD Collaborative – NDIS Access and Eligibility Policy for Independent Assessments
- GUARD Collaborative – Consultation on the MSAC revised draft guidelines
- GUARD Collaborative – Inquiry into approval processes for new drugs and novel medical technologies in Australia
- GUARD Collaborative COVID-19 statement
- Consultation on national model for clinical consent to genomic testing
- NDIS Planning
- The NDIS Act Review and NDIS Participant Service Guarantee discussion paper
- NDIS Thin Markets Project
- NDIS ICT Systems
- NDIS Assistive Technology Systems
- Supported School Transport and Transition to the National Disability Insurance Scheme
- Draft disability action plan 2018-2020 DHHS consultation survey
- Consultation draft of the National Health Genomics Policy Framework
- NDIS Code of Conduct Discussion Paper
- Response to consultation draft implementation plan for the National Health Genomics Policy Framework
- Inquiry into the Provision of Services under the NDIS Early Childhood Early Intervention Approach
- Response to Genomic Health Care for Victoria discussion paper
- Carers Draft Service Concept
- Current levels of access and attainment for students with disability in the school system
- Inquiry into Childcare and Early Childhood Learning
- SWAN Siblings
- SWAN Information
- SWAN Health Professionals
- SWAN Genomic Testing
- SWAN Diagnostic Pathways
- The Need for Genomic Testing
- Lily’s Story
- Rare Disease Day Heroes
- Assoc Prof Sue White
- Shannae and Eddy
- Will’s Dream
- Bec, Ruby and Sophie
- Belinda, Lauchlan and Maddy
- Kris and Will
- UCAD 2015 – UK
- About SWAN UK
- Without A Diagnosis – Kat Williams
- Ellie’s Story – SWAN UK UCAD 2016
- UCAD 2016 – Australia
- UCAD 2014 – Australia
- Find Your Rare Genetic Tribe
- FaceMatch Launch
- My Genome Sequence
- Whole Genome Sequencing and You
- Ambry Genetics: What is Exome Sequencing?
- Ambry Genetics: The Clinical Applications of Exome Sequencing
- DNA, genes and genome
- The 100,000 Genomes Project
- Meet the Expert Series: “Coping in the pandemic… what helps” – Recorded May 2020
- Meet the Expert Series: A Parent’s Perspective of Genetic Epilepsy – Recorded April 2020
- Meet the Expert Series: Becoming Chief – Recorded March 2020
- Meet the Expert Series: FaceMatch – Recorded February 2020
- Meet the Expert Series: Genomics and Technology – Recorded September 2019
- Meet the Expert Series: Genetic Counselling – Recorded August 2019
- NDIS – “Cutting Through The Guff”
- SWAN Siblings Presentation
- SWAN Families
- Genetic Testing Explained
- Supporting SWAN Families
- Genetic Testing
- About SWAN Australia
- SWAN Families
- SWAN2019 Conference Linda Fothergill (MC) Recorded: 19 October 2019
- SWAN2019 Conference Kris Pierce Recorded: 19 October 2019
- SWAN2019 Conference Dr Cas Simons Recorded: 19 October 2019
- SWAN2019 Conference Renee Swannack (SWAN Parent) Recorded: 19 October 2019
- SWAN2019 Conference Rhiana Spinoso Recorded: 19 October 2019
- SWAN2019 Conference Jane Tiller Recorded: 19 October 2019
- SWAN2019 Conference Associate Professor Sue White Recorded: 19 October 2019
- SWAN2019 Conference Professor David Amor Recorded: 19 October 2019
Events
- Undiagnosed Children’s Awareness Day and SWAN’s 10th Birthday
- SWAN bereavement group virtual catch up
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN informal virtual chat session with members
- Meet the Expert Series: Libby Roden, Grief and Bereavement
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- Meet the Expert Series: Helen Johnson
- SWAN informal virtual chat session with members
- SWAN informal virtual chat with Newcastle members
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- Meet the Expert Series: Kate Strohm at Siblings Australia
- Meet the Expert Series: Psychologist Evelyn Bugel
- Defend our NDIS – National Day of Action – SWAN virtual event
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN Siblings High School Zoom
- SWAN Siblings Primary School Zoom
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- Meet the Expert Series: Carer Gateway – Wellways Session
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- Rare Disease Day 2022
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN informal virtual chat session with members
- Meet the Expert Series: Queen Elizabeth Centre – Exploring Sleep and Behaviour for children 0 – 4 years
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN informal virtual chat session with members
- SWAN AGM
- National Carers Week – SWAN Virtual Event
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN informal virtual chat session with members
- SWAN informal virtual chat session with members who have a SWAN child over 10 years old
- SWAN Disability Transition Conference – Pre-Conference Dinner – Newcastle
- SWAN Disability Transition Conference – Pre-Conference Dinner – Canberra
- SWAN Disability Transition Conference – Pre-Conference Dinner – Gold Coast
- SWAN Disability Transition Conference – Pre-Conference Dinner – Launceston
- SWAN Disability Transition Conference – Pre-Conference Dinner – Hobart
- SWAN Disability Transition Conference – Pre-Conference Dinner – Adelaide
- SWAN Disability Transition Conference – Pre-Conference Dinner – Perth
- SWAN Disability Transition Conference – Pre-Conference Dinner – Brisbane
- SWAN Disability Transition Conference – Pre-Conference Dinner – Sydney
- SWAN Disability Transition Conference – Pre-Conference Dinner – Melbourne
- SWAN Disability Transition Conference features a number of speakers with lived experience of caring for a child with a disability.
Contact Us / Media Enquiries
- PO Box 390 Fairfield VIC 3078
- 0404 280 441
- info@swanaus.org.au