Resources
Tay-Sachs and Sandhoff Diseases
- The Australian Government, healthdirect, Tay-Sachs disease: https://www.healthdirect.gov.au/tay-sachs-disease
- The Brain Foundation, Disorders, Tay-Sachs disease: https://brainfoundation.org.au/disorders/tay-sachs-disease/
- State Government of Victoria, BetterHealthChannel, Tay-Sachs disease: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/tay-sachs-disease
- United States Government, National Institutes of Health, U.S. National Library of Medicine, Tay-Sachs disease: https://ghr.nlm.nih.gov/condition/tay-sachs-disease
- United States Government, National Institutes of Health, U.S. National Library of Medicine, Sandhoff disease: https://ghr.nlm.nih.gov/condition/sandhoff-disease
- United States Government, National Centre for Advancing Translational Sciences, Genetic and Rare Diseases Information Centre, Tay-Sachs disease: https://rarediseases.info.nih.gov/diseases/7737/tay-sachs-disease
- United States Government, National Institutes of Health, Sandhoff disease: https://rarediseases.info.nih.gov/diseases/7604/sandhoff-disease
- National Organization for Rare Disorders, Tay Sachs Disease: https://rarediseases.org/rare-diseases/tay-sachs-disease/
- National Organization for Rare Disorders, Sandhoff Disease: https://rarediseases.org/rare-diseases/sandhoff-disease/
- Australian Government, Cancer Australia Targeted therapy: https://canceraustralia.gov.au/affected-cancer/treatment/targeted-therapy
healthdirect
- Central nervous system: https://www.healthdirect.gov.au/central-nervous-system
- Guide to genetic disorders: https://www.healthdirect.gov.au/guide-to-genetic-disorders
- Tay-Sachs disease: https://www.healthdirect.gov.au/tay-sachs-disease
Mackenzie’s Mission
- Providing couples with information and choices for their family planning: https://www.mackenziesmission.org.au/
Merriam-Webster
National Institutes of Health (NIH) National Human Genome Research Institute
National Institutes of Health (NIH) U.S. National Library of Medicine
- What is a chromosome? https://ghr.nlm.nih.gov/primer/basics/chromosome
- What is DNA? https://ghr.nlm.nih.gov/primer/basics/dna
National Organization for Rare Disorders (NORD)
- Sandhoff Disease: https://rarediseases.org/rare-diseases/sandhoff-disease/
- Tay-Sachs Disease: https://rarediseases.org/rare-diseases/tay-sachs-disease/
NSW Government Centre for Genetics Education
- Fact Sheet 7 – Autosomal Recessive Inheritance: https://www.genetics.edu.au/publications-and-resources/facts-sheets/fact-sheet-7-autosomal-recessive-inheritance
Sanfilippo Children’s Foundation
- Current Therapy Avenues: https://www.sanfilippo.org.au/research/therapy-avenues
Receiving a Diagnosis
- Australian Government, Services Australia, Medicare: https://www.servicesaustralia.gov.au/individuals/subjects/how-enrol-and-get-started-medicare/enrolling-medicare
- NDIS, Am I eligible: https://www.ndis.gov.au/applying-access-ndis/am-i-eligible
- The Australian Government’s Health Direct website can help you find health services locally: https://www.healthdirect.gov.au/australian-health-services
- Australian Government’s Pregnancy, Birth & Baby: https://www.pregnancybirthbaby.org.au/australian-health-services
NDIS
- NDIS, Homepage: https://www.ndis.gov.au/
- NDIS, For participants: https://www.ndis.gov.au/participants
- NDIS, Get support for your child: https://www.ndis.gov.au/understanding/families-and-carers/get-support-your-child
- NDIS, Help for children under 7: https://www.ndis.gov.au/understanding/how-ndis-works/help-children-under-7
- NDIS, List D – Permanent impairment/Early intervention, under 7 years – no further assessment required: https://www.ndis.gov.au/about-us/operational-guidelines/access-ndis-operational-guideline/list-d-permanent-impairmentearly-intervention-under-7-years-no-further-assessment-required
- The Growing Space – NDIS, Disability, Advocacy, Consultancy and Support Coordination, Homepage: https://www.thegrowingspace.com.au/
- Carers Australia, What is the NDIS: https://www.carersaustralia.com.au/ndis-and-carers/what-is-the-ndis/
- Endeavour, How to speak NDIS: https://www.endeavour.com.au/media-news/blog/how-to-speak-ndis
Government & Financial Support
- Carers, such as Carer Payment and Carer Allowance: https://www.servicesaustralia.gov.au/individuals/carers
- Families, such as Family Tax Benefit A, B and Supplements; Child Care Subsidy and Additional Child Care Subsidy, and; Parenting Payment, Paid Parental Leave and Dad and Partner Pay: https://www.servicesaustralia.gov.au/individuals/families
- Separated parents, including child support: https://www.servicesaustralia.gov.au/individuals/separated-parents
- Job seekers, such as JobSeekerpayment: https://www.servicesaustralia.gov.au/individuals/job-seekers
- Concessions, including the Health Care Card and those provided by your state or territory Government: https://www.servicesaustralia.gov.au/individuals/subjects/concession-and-health-care-cards
- Health, including:
- Medicare Safety Nets, which can help to lower your out-of-pocket medical costs for out of hospital services: https://www.servicesaustralia.gov.au/individuals/services/medicare/medicare-safety-nets
- Register to benefit from the Safety Nets: https://www.servicesaustralia.gov.au/individuals/services/medicare/medicare-safety-nets/how-register
- Pharmaceutical Benefits Scheme Safety Net: https://www.servicesaustralia.gov.au/individuals/services/medicare/pharmaceutical-benefits-scheme/when-you-spend-lot-pbs-medicines
- Apply for a PBS Safety Net Card: https://www.servicesaustralia.gov.au/individuals/services/medicare/pharmaceutical-benefits-scheme/when-you-spend-lot-pbs-medicines/pbs-safety-net-card-application
- MoneySmart: https://moneysmart.gov.au/
Medicare & Private Health Insurance
- Australian Government, Ambulance cover: https://privatehealth.gov.au/health_insurance/what_is_covered/ambulance.htm
- Australian Government, Private Health Insurance: https://www.privatehealth.gov.au/
Consumer Rights
- The Australian Competition and Consumer and Commission (ACCC), Consumer rights: https://www.accc.gov.au/consumers
- Australian Commission on Safety and Quality in Health Care, Australian Charter of Healthcare Rights: https://www.safetyandquality.gov.au/australian-charter-healthcare-rights
- National Disability Insurance Scheme (NDIS), Your consumer rights: https://www.ndis.gov.au/participants/home-equipment-and-supports/assistive-technology-explained/your-consumer-rights
Advocacy
- Genetic Alliance of Australia: http://www.geneticalliance.org.au/
- Genetic and Rare Disease Network: https://gardn.org.au/
- Genetic Support Network Victoria: https://www.gsnv.org.au/
- Rare Voices Australia: https://www.rarevoices.org.au/
- Syndromes Without A Name (SWAN): https://swanaus.org.au/
Carers
- Carer Gateway, Homepage: https://www.carergateway.gov.au/
- Health Direct, Mental health care plan: https://www.healthdirect.gov.au/mental-health-care-plan
- Beyond Blue, Homepage: https://www.beyondblue.org.au/home
- Australian Government, Carer Gateway: https://www.carergateway.gov.au/
- Parkinsons SA, Radical Resilience – Margie Stevens: https://vimeo.com/385873719
- The Five Love Languages, Homepage: https://www.5lovelanguages.com/
- Australian Psychological Society, Homepage: https://www.psychology.org.au/
- Paediatric Palliative Care, Homepage: https://palliativecare.org.au/children
- Paediatric Palliative Care, Helping your Partner: https://palliativecare.org.au/helping-your-partner
Relationships
- Relationships Australia, Homepage: https://www.relationships.org.au/
Siblings
- Paediatric Palliative Care, Sibling Support: https://palliativecare.org.au/sibling-support
- Siblings Australia, Homepage: https://siblingsaustralia.org.au/
Australian Local Government Association
- Facts and Figures: https://alga.asn.au/facts-and-figures/
healthdirect
- Counsellors and counselling: https://www.healthdirect.gov.au/counsellors-and-counselling
- Dietitians: https://www.healthdirect.gov.au/dietitians
- Getting the most out of your pharmacist: https://www.healthdirect.gov.au/getting-the-most-out-of-your-pharmacist
- Occupational therapy: https://www.healthdirect.gov.au/occupational-therapy
- Physiotherapy: https://www.healthdirect.gov.au/physiotherapy
- Psychologists and psychology: https://www.healthdirect.gov.au/psychologists-and-psychology
- Social workers: https://www.healthdirect.gov.au/social-workers
- Speech pathology: https://www.healthdirect.gov.au/speech-pathology
- The public and private hospital systems: https://www.healthdirect.gov.au/understanding-the-public-and-private-hospital-systems
- The role of a GP: https://www.healthdirect.gov.au/the-role-of-a-gp
- What does a neurologist do? https://www.healthdirect.gov.au/what-does-a-neurologist-do
International Council of Nurses
- Nursing Definitions: https://www.icn.ch/nursing-policy/nursing-definitions
National Disability Insurance Scheme
- What is the NDIS? https://www.ndis.gov.au/understanding/what-ndis
- Who’s rolling out the NDIS? https://www.ndis.gov.au/understanding/what-ndis/whos-rolling-out-ndis
Palliative Care Australia
- What is palliative care? https://palliativecare.org.au/what-is-palliative-care
Parliamentary Education Office
- Three levels of government: governing Australia: https://peo.gov.au/understand-our-parliament/how-parliament-works/three-levels-of-government/three-levels-of-government-governing-australia/
Caring for your child or loved one
- Allied Health: https://www.healthdirect.gov.au/allied-health
Equipment
- raisingchildren.net.au, Child car seats: a guide: https://raisingchildren.net.au/preschoolers/safety/car-pedestrian-safety/child-car-seats-restraints
- Australian Car Restraint Resource Initiative, Homepage: https://acri.com.au/
Communication & Play
- Baby’s Musical Hands https://play.google.com/store/apps/details?id=com.StreamingColour.MusicalHands&hl=en_AU
- Heat Pad – Relaxing Heat Sensitive Surface! (free) or Heat Pad HD – Relaxing Heat Sensitive Surface https://apps.apple.com/au/app/heat-pad-relaxing-heat-sensitive-surface/id445627681 and https://apps.apple.com/us/app/heat-pad-hd-relaxing-heat-sensitive-surface/id407967413
- Sensory App House: https://www.sensoryapphouse.com/
Palliative and end-of-life care
- Palliative Care Australia, Homepage: https://palliativecare.org.au/
- Palliative Care Australia, What is palliative care? https://palliativecare.org.au/what-is-palliative-care
- Paediatric Palliative Care, Here for you, Things you might like to discuss with the palliative care team: https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2020/01/Here_For_you_booklet_1.pdf
- Paediatric Palliative Care, Homepage: https://palliativecare.org.au/children
- Family companion https://palliativecare.org.au/a-family-companion
- End of Life: https://palliativecare.org.au/carer-resources/end-of-life
- Here for You – Things you might like to discuss with the palliative care team (QUT Resource): https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2020/01/Here_For_you_booklet_1.pdf
- Here for You: Things you might like to discuss with the palliative care team about care at the end of life (QUT resource booklet 2): https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2020/01/Here_For_you_booklet_2.pdf
- Selecting a Funeral Director: https://palliativecare.org.au/selecting-a-funeral-director
- What to do if your child dies at home: https://palliativecare.org.au/what-to-do-if-your-child-dies-at-home
- What to expect in the final days: https://palliativecare.org.au/what-to-expect-in-the-final-days
- Arranging Your Child’s Funeral: https://rednosegriefandloss.org.au/support/article/arranging-your-childs-funeral
- Death and bereavement: https://www.servicesaustralia.gov.au/individuals/subjects/death-and-bereavement
- Australian Centre for Grief and Bereavement (ACGB), Homepage: https://www.grief.org.au/
- MyGrief App: https://www.grief.org.au/ACGB/ACGB_Publications/Resources_for_the_Bereaved/MyGrief_App.aspx
- Beyond Blue, Homepage: https://www.beyondblue.org.au/
- Headspace, Homepage: https://headspace.org.au/
- Lifeline, Homepage: https://www.lifeline.org.au/
- Paediatric Palliative Care, Siblings and Grief: https://palliativecare.org.au/siblings-and-grief
- Paediatric Palliative Care, Bereavement: https://palliativecare.org.au/carer-resources/bereavement
- Women’s and Children’s Health Network, What is grief?: http://www.wch.sa.gov.au/support/grief/what_is_grief.html
- Red Nose Grief and Loss, Homepage: https://rednosegriefandloss.org.au/
