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Support and Services Directory

This directory brings together rare condition and community support organisations, services and resources that may be helpful for people living with rare, genetic or undiagnosed conditions, their families, guardians and carers.

Search by organisation, condition, condition group or support need, or browse the categories below.

Services and eligibility can change, so check each organisation’s website for current information. Inclusion does not constitute endorsement by Genetic Alliance Australia and does not replace professional advice.

This is a community-informed resource

We welcome your help to strengthen it. If an organisation or service has supported you, your family or your community, please recommend it for inclusion [contact us] Please [contact us] if you notice a broken link or information that needs updating.

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Genetics & genetic counselling

Support for your community

Disability, practical & financial support

Rights, education, work & transitions

Family, wellbeing & emotional support

Pregnancy, family planning & reproductive support

Research & participation

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Support for your community

13YARN

Australia-wide
Call 13YARN on 13 92 76 for a free, confidential yarn with an Aboriginal or Torres Strait Islander Crisis Supporter. It is available day or night if you are feeling worried, overwhelmed or unable to cope, without shame or judgement.
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22q Foundation Australia and New Zealand

International
Supports people and families affected by 22q11.2 deletion syndrome, 22q11.2 duplication syndrome and other 22q-related conditions. It provides information, education, awareness and community connection across Australia and New Zealand.
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Family, wellbeing & emotional support

22qMinded International

International
22qMinded connects people affected by 22q11.2 deletion, duplication and related conditions with 22q-informed psychologists. It offers online coaching, educational resources and webinars addressing emotional, behavioural and psychological needs across childhood, adulthood and family life.
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Disability, practical & financial support

ACT Government: public and community housing

ACT
ACT Government pathway to check eligibility and apply for public or community housing. It explains income, asset and residency requirements, housing types and how disability, medical or support needs can be considered in the application.
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Disability, practical & financial support

ACT Interstate Patient Travel Assistance Scheme (IPTAS)

ACT
ACT Government assistance towards travel and accommodation for eligible ACT or Jervis Bay Territory residents referred interstate for specialist medical or oral surgical treatment that is not available within the ACT public or private health system.
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Support for your community

ADEC: advocacy

VIC
Free disability advocacy for people from culturally and linguistically diverse backgrounds in Victoria. ADEC can use interpreters and multilingual staff to help people understand rights, address problems, prepare for meetings or make complaints. Eligibility and waiting times apply.
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Family, wellbeing & emotional support

Advance Care Planning Australia

Australia-wide
Free national guidance on advance care planning, including starting conversations, choosing a substitute decision-maker and completing the documents recognised in each state or territory. People, families and health professionals can contact its advisory service.
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Rights, education, work & transitions

Advocacy for Inclusion: individual advocacy

ACT
Free, short-term individual advocacy for people with disability in the ACT. An advocate can help you understand your rights, prepare for or attend meetings and hearings, raise concerns and build confidence to speak up for yourself.
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Rights, education, work & transitions

Advocacy Tasmania

TAS
Free, confidential and independent advocacy for people with disability and others using health or community services across Tasmania. Advocates follow your instructions, help you understand options and support you to have your voice heard.
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Albinism Fellowship of Australia

Australia-wide
Peer support and advocacy for Australians affected by albinism. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Support for your community

ALIGN: Indigenous genomics community resources

Australia-wide
Community-focused, culturally appropriate information about genetics and genomics for Aboriginal and Torres Strait Islander peoples. Resources include rare genetic conditions, meeting a genetic counsellor, getting started with counselling and an interactive genetic-services map.
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Alike WA – Rare, Genetic and Undiagnosed Conditions Sector Program

WA
A Western Australian sector-development program supporting rare, genetic and undiagnosed condition groups, organisations and individuals. It offers connection, training, resources, advocacy and tools to strengthen peer-led groups and the wider community.
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Rights, education, work & transitions

AllPlay Learn

VIC
Evidence-informed online resources for students, families, teachers and schools to create more inclusive education for children and young people with disability or developmental challenges across early learning, primary and secondary settings.
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Alpha-1 Organisation Australia Inc

Australia-wide
Support for people affected by Alpha-1 antitrypsin deficiency. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Alport Foundation of Australia

Australia-wide
Support, education and research for families affected by Alport syndrome. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Support for your community

AMPARO Advocacy

QLD
Independent advocacy for Queenslanders with disability from culturally and linguistically diverse backgrounds. Individual advocacy is mainly available in Brisbane and Moreton Bay, while AMPARO can provide information and referrals statewide. Eligibility and capacity apply.
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Disability, practical & financial support

Angel Flight Australia

Australia-wide
Coordinates free, non-emergency flights and ground transfers so people in rural and remote Australia can reach specialist medical treatment. Requests are generally arranged with a health professional and are subject to eligibility.
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Angelman Syndrome Association Australia

Australia-wide
Support, information and advocacy for the Australian Angelman syndrome community. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Disability, practical & financial support

Annual health assessment for people with intellectual disability

Australia-wide
People with intellectual disability can ask their usual GP for a Medicare-supported annual health assessment. The longer appointment reviews physical, psychological and social health, can identify unmet needs, and may lead to a written plan, referrals and follow-up care.
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Research & participation

Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry

International
An Australia and New Zealand clinical registry for people with aplastic anaemia and other bone marrow failure syndromes. Participation is usually offered through a treating hospital; the registry also supports linked research and a biobank.
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Asia Pacific Alliance of Rare Disease Organisations (APARDO)

International
A regional alliance of rare disease and rare cancer patient organisations across Asia and the Pacific. APARDO supports collaboration, shared learning, advocacy and a stronger regional voice for people and families affected by rare conditions.
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Rights, education, work & transitions

Assistance for Isolated Children Scheme

Australia-wide
Services Australia payments for families whose child cannot attend a local government school because of geographical isolation, disability or special education needs, or no reasonable school access. Check the official eligibility and study requirements before applying.
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Disability, practical & financial support

Association for Children with a Disability

VIC
Supports families of children and young people with disability or developmental delay, across diagnoses and disability types. It provides information, advocacy resources, workshops and opportunities for family connection.
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Rights, education, work & transitions

Association for the Wellbeing of Children in Healthcare (AWCH)

Australia-wide
Advocates for the wellbeing, rights and healthcare experiences of children, young people and families across conditions. Its work includes education, resources and improvements to child- and family-centred care.
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ausEE Inc.

International
Supports people affected by eosinophilic gastrointestinal disorders, including eosinophilic oesophagitis and related conditions. It provides information, peer connection, advocacy and practical resources for individuals and families.
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Research & participation

Australasian Interstitial Lung Disease Registry

International
A registry for people with interstitial lung disease who attend participating clinics in Australia and New Zealand. It collects health information and samples to support research and improve understanding and care across different interstitial lung diseases.
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Australia and New Zealand Vasculitis Society (ANZVASC)

International
Education, collaboration and research relating to vasculitis across Australia and New Zealand. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Australian Addisons Disease Association Inc

Australia-wide
Support and information for people living with Addison’s disease. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Australian and New Zealand Forum for Autoinflammatory Diseases

International
Clinical collaboration and education relating to autoinflammatory diseases. It provides accessible information, community connection and guidance to relevant services, resources and opportunities for individuals and families.
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Australian Beckwith-Wiedemann Syndrome Support Group

Australia-wide
Peer support for Australian families affected by Beckwith-Wiedemann syndrome. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Rights, education, work & transitions

Australian Centre for Disability Law

NSW
Community legal centre providing free advice about disability discrimination in New South Wales, selected casework, referrals and accessible legal education. People outside NSW can use its referral information to find an appropriate interstate service.
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Research & participation

Australian Clinical Trials – ANZCTR trial search

Australia-wide
Australian Government information and search service for people considering clinical trials. Its search draws from the Australian New Zealand Clinical Trials Registry and ClinicalTrials.gov records with Australian sites, with study contact details available.
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Australian Cystinosis Support Group

Australia-wide
Support and connection for Australian families affected by cystinosis. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Disability, practical & financial support

Australian Disability Parking Scheme

Australia-wide
Official information about the Australian Disability Parking Scheme and nationally recognised permits. Applications and eligibility are managed by each state and territory, so follow the relevant jurisdiction link to apply, renew or check local permit rules.
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Australian Disorders of the Corpus Callosum (AusDoCC)

Australia-wide
Support and resources for people with disorders of the corpus callosum. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Australian Dysphonia Network

Australia-wide
Information and peer support for people living with voice disorders. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Australian Foundation for CDKL5 Research Limited

Australia-wide
Research and family support for CDKL5 deficiency disorder. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Australian Galactosaemia Support Network

Australia-wide
Peer support for Australian families affected by galactosaemia. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Australian Gorlin Syndrome Mutual Support Group

Australia-wide
Peer support and information for people affected by Gorlin syndrome. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Research & participation

Australian Haemochromatosis Registry

Australia-wide
A national registry for people in Australia with haemochromatosis. Participants contribute de-identified health information to support research into inherited iron overload, its effects on health and ways to improve care and outcomes.
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Research & participation

Australian Haemoglobinopathy Registry

Australia-wide
A national clinical registry for people with sickle cell disease, beta thalassaemia major and other haemoglobinopathies. Participation is generally arranged through a treating service and supports research into care, outcomes and quality of life.
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Rights, education, work & transitions

Australian Human Rights Commission – disability discrimination complaints

Australia-wide
National complaints pathway for disability discrimination under federal law. It covers unfair treatment in employment, education, accommodation, services and public places, and provides information about making a complaint or seeking another appropriate service.
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Research & participation

Australian Inherited Retinal Disease Registry and DNA Bank

Australia-wide
A national registry and DNA bank for people and families affected by inherited retinal disease. Participants can express interest in contributing a blood or saliva sample to support genetic research, diagnosis and future treatment studies.
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Research & participation

Australian Leukodystrophy Clinical and Research Program

Australia-wide
A national program for children and adults with diagnosed or undiagnosed leukodystrophy or a white matter disorder. Its research includes a patient registry, natural history studies and clinical trials, with an online expression-of-interest pathway.
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Research & participation

Australian Neuromuscular Disease Registry

Australia-wide
A national registry for people with participating neuromuscular conditions, including SMA, Duchenne muscular dystrophy, FSHD, myotonic dystrophy and several muscular dystrophies and myopathies. Registration supports research, care planning and trial readiness.
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Australian NPC Disease Foundation Inc

Australia-wide
Support, advocacy and research for Niemann-Pick disease type C. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Australian Pituitary Foundation

Australia-wide
Information and support for people affected by pituitary conditions. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Australian Pompe Association

Australia-wide
Support and advocacy for Australians living with Pompe disease. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Australian Sickle Cell Advocacy Inc (ASCA)

Australia-wide
Advocacy and support for Australians affected by sickle cell disease. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Australian X and Y Spectrum Support (AXYS)

Australia-wide
Supports people with X and Y chromosome variations, including XXY, XYY, XXX, XXYY and related variants. It provides information, peer connection and guidance for individuals, families, educators and health professionals.
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Support for your community

Baby Coming You Ready?

Australia-wide
Pregnancy and early parenting information for Aboriginal and Torres Strait Islander mums, dads and families. Its community-designed digital tool supports a yarn with participating health professionals about strengths, worries, social and emotional wellbeing, and the care you want.
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Batten Disease Support and Research Association Australia (BDSRA Australia)

Australia-wide
Support and research for families affected by Batten disease. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Pregnancy, family planning & reproductive support

Bears of Hope

Australia-wide
Supports families following pregnancy or baby loss through free grief counselling, peer groups, workshops, remembrance resources and practical support. It also offers connection for parents navigating pregnancy or parenting after loss.
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BEECH Australian Community

Australia-wide
Supports people affected by bladder exstrophy, epispadias, cloacal exstrophy, hypospadias and related conditions. It provides peer connection, lived-experience information and support for individuals and families.
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Disability, practical & financial support

Belongside Families

Australia-wide
Free, family-led support for families raising children with disability, developmental delay, autism, rare or genetic conditions. Parent groups, one-to-one guidance, workshops and practical resources help families navigate diagnosis, the NDIS, school, services and everyday family life.
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Rights, education, work & transitions

Belongside Families: school resources

Australia-wide
Practical, family-led guidance for supporting a child with disability, developmental delay, a rare or genetic condition at school. Resources cover transitions, school meetings, inclusion, individual education plans, funding, teacher partnerships and rights.
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Family, wellbeing & emotional support

Beyond Blue

Australia-wide
Provides mental health information and short-term support for anxiety, depression and emotional distress. People across Australia can connect by phone or online for counselling, practical information and guidance to other services.
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Family, wellbeing & emotional support

Birth Trauma Australia

Australia-wide
Supports women, birthing people, fathers, partners and families affected by physical or psychological birth-related trauma. It offers national peer support, practical information and free telehealth pelvic physiotherapy guidance.
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Support for your community

Black Rainbow

Australia-wide
Black Rainbow supports Aboriginal and Torres Strait Islander LGBTIQA+SB people through community connection, wellbeing resources and practical programs. Current initiatives include phone and data support, community micro-grants and the Futures Fund development bursary.
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BPTF Families

International
Support and connection for families affected by BPTF-related conditions. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Brain Tumour Alliance Australia (BTAA)

Australia-wide
Supports people affected by primary, secondary, malignant and non-malignant brain tumours. It provides national advocacy, information and connection for patients, families, carers and brain tumour organisations.
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Branchio-Oto-Renal Syndrome Education Centre

International
Education and support for people affected by branchio-oto-renal syndrome. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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BrAshA-T Ataxia-Telangiectasia Limited

Australia-wide
Support, awareness and research for families affected by ataxia-telangiectasia. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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CAH Support Group Australia

Australia-wide
Support and information for people affected by congenital adrenal hyperplasia. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Research & participation

Cantú Syndrome Registry

International
An international registry for people with Cantú syndrome or a suspected diagnosis. Individuals and families can register to help researchers understand the condition, receive study information and connect with Cantú syndrome research and clinical activities.
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Research & participation

CaRDinal

Australia-wide
CaRDinal is a national cloud-based platform enabling Australian rare disease research cohorts to share genomic data securely, analyse unsolved cases and collaborate on diagnosis and gene discovery. It is for research teams and does not directly enrol individuals or families.
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Cardiomyopathy Australia New Zealand

Australia-wide
Information and peer support for people living with cardiomyopathy. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Support for your community

Carer Gateway First Nations fact sheet

Australia-wide
Carer Gateway’s First Nations fact sheet explains where Aboriginal and Torres Strait Islander carers can find support. Carers can also contact Carer Gateway for counselling, coaching, peer support, respite and practical help.
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Family, wellbeing & emotional support

Carer Gateway: coaching

Australia-wide
Carer Gateway offers free in-person coaching and self-guided online coaching for carers. It can help carers reflect on their needs and caring role, identify personal goals and work through practical steps at their own pace.
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Family, wellbeing & emotional support

Carer Gateway: counselling

Australia-wide
Carer Gateway provides free counselling for carers experiencing stress, sadness, frustration or other pressures connected with caring. Options include one-to-one and group counselling in person, and individual phone counselling for carers aged 18 and over.
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Family, wellbeing & emotional support

Carer Gateway: emergency respite

Australia-wide
If you become sick or injured and cannot continue caring, call Carer Gateway on 1800 422 737 at any time. A local provider can discuss options and arrange emergency respite where a suitable service is available.
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Family, wellbeing & emotional support

Carer Gateway: online skills courses

Australia-wide
Carer Gateway’s free online skills courses provide information, practical tips and self-paced learning for carers. They are designed to build understanding and skills for the caring role, including support for wellbeing and legal responsibilities.
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Family, wellbeing & emotional support

Carer Gateway: tailored support packages

Australia-wide
Eligible unpaid carers may receive free practical support tailored to their needs, including planned respite, cleaning, cooking, shopping, transport, tutoring, training or education equipment. Call 1800 422 737 to complete a carer support planning process.
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Support for your community

CarerHelp – Aboriginal and Torres Strait Islander family pathways

Australia-wide
Resources for Aboriginal and Torres Strait Islander people caring for a family member who is very sick. Three guided pathways cover getting ready to care, caring when someone is finishing up, and grief and life after caring.
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Family, wellbeing & emotional support

Centre of Perinatal Excellence (COPE)

Australia-wide
Provides evidence-based perinatal mental health information and the COPE Directory for finding nearby professionals and support services. It includes pathways for pregnancy loss, unexpected prenatal news and infants with additional needs.
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Pregnancy, family planning & reproductive support

Centre of Research Excellence in Stillbirth

Australia-wide
Provides evidence-based information and support resources for parents after stillbirth and other pregnancy loss. Parents can also join research, co-design and lived-experience opportunities through its national engagement pathways.
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CF Together

Australia-wide
Support and services for people and families affected by cystic fibrosis. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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CHARGE Syndrome Australia Ltd

International
Support, information and connection for the Australasian CHARGE syndrome community. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Childhood Dementia Initiative

Australia-wide
Works across the many rare genetic conditions that cause progressive cognitive decline in children. It brings families, clinicians and researchers together to advance awareness, research, diagnosis, care and support.
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Rights, education, work & transitions

Children and Young People with Disability Australia (CYDA)

Australia-wide
National peak body representing children and young people with disability aged 0–25. Its accessible resources and programs support inclusive education, employment, self-advocacy and major transitions such as starting school, work and independent adulthood.
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Research & participation

Children’s Tumor Foundation: NF Registry

International
A global patient-powered registry for people with NF1 and all types of schwannomatosis, including NF2-related schwannomatosis. Adults and parents or guardians can join, complete an annual survey and hear about research and trials.
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Children’s Tumour Foundation

Australia-wide
Supports people affected by neurofibromatosis type 1, NF2-related schwannomatosis and other schwannomatosis conditions. It provides information, support services, advocacy, community programs and research investment across Australia.
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CJD Support Group Network Australia

Australia-wide
Supports families affected by Creutzfeldt-Jakob disease and other human prion diseases. It provides information, emotional support, advocacy and specialist guidance throughout diagnosis, care and bereavement.
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CleftPALS NSW

NSW
Peer support and practical information for NSW families affected by cleft conditions. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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CleftPALS Victoria

VIC
Peer support and practical information for Victorian families affected by cleft conditions. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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CleftPALS WA

WA
Peer support and practical information for WA families affected by cleft conditions. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Research & participation

Cliniface

International
Free 3D facial visualisation, measurement and analysis software for clinicians and researchers. It supports assessment of facial variation associated with rare and genetic conditions, including diagnosis, screening, monitoring and research; it is not a consumer diagnostic service.
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CMT Australia

Australia-wide
Supports people living with Charcot-Marie-Tooth disease and related inherited peripheral neuropathies. It provides information, peer connection, advocacy and research updates for individuals, families and health professionals.
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Family, wellbeing & emotional support

Collaboraide – Dr Leigh Donovan

Australia-wide
Australian consultancy led by Dr Leigh Donovan, providing bespoke grief and bereavement counselling for individuals, alongside supervision, mentoring and consultancy for organisations and practitioners working in palliative care, loss and bereavement.
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Disability, practical & financial support

Companion Card programs

Australia-wide
State and territory Companion Card programs help eligible people with significant, permanent disability participate in community activities. When the cardholder buys a ticket at a participating venue or event, their companion receives free entry.
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Congenital CMV Association of Australia

Australia-wide
National support, education and awareness for people affected by congenital cytomegalovirus. It offers trusted information, family peer connection and resources for parents, pregnant people, adults born with cCMV and health professionals.
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Congenital Diaphragmatic Hernia (CDH) Australia

Australia-wide
Support and advocacy for families affected by congenital diaphragmatic hernia. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Research & participation

Congenital Muscle Disease International Registry

International
An international registry for people with congenital muscle disease, including people who have muscle weakness but no confirmed genetic diagnosis. Participants can contribute health information and may hear about relevant research or clinical trials.
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Connective Tissue Disorders Network Australia

Australia-wide
Supports people with heritable connective tissue disorders, including Ehlers-Danlos syndromes, Marfan syndrome, Loeys-Dietz syndrome, hypermobility spectrum disorders and related conditions. It provides advocacy, education and community connection.
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Cornelia de Lange Syndrome Association (Australasia) Inc

International
Support and information for families affected by Cornelia de Lange syndrome. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Cri du Chat Support Group of Australia Inc

Australia-wide
Support and connection for families affected by Cri du Chat syndrome. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Crohn’s & Colitis Australia

Australia-wide
Supports people living with inflammatory bowel disease, including Crohn’s disease and ulcerative colitis. It provides information, helpline support, education, advocacy, research and community connection across Australia.
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Cure CASK

International
Research and family support for CASK-related disorders. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Cure EB Foundation

Australia-wide
Research and support for people affected by epidermolysis bullosa. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Cystic Fibrosis Australia

Australia-wide
National advocacy, research and support for the cystic fibrosis community. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Cystic Fibrosis Queensland

QLD
Support and services for Queenslanders affected by cystic fibrosis. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Cystic Fibrosis Western Australia

WA
Support and services for Western Australians affected by cystic fibrosis. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Daniel Ferguson LGMD Foundation

Australia-wide
Research and awareness for limb-girdle muscular dystrophy. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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DEBRA Australia

Australia-wide
Supports people living with all forms of epidermolysis bullosa and their families. It provides information, practical assistance, advocacy, community connection and support for research and improved care.
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Dementia Australia

Australia-wide
Information, support and advocacy for people affected by dementia. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Research & participation

Developmental and Epileptic Encephalopathy Natural History Study

International
A natural history study following people with developmental and epileptic encephalopathies across the lifespan. People with a DEE, or a family member, can register online and may be invited to complete questionnaires, samples or assessments.
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Rights, education, work & transitions

Disability Advocacy and Complaints Service of South Australia

SA
Free, independent advocacy for people with disability across South Australia. Advocates can help people understand rights, communicate their wishes, address service or discrimination concerns, make complaints and participate in decisions affecting their lives.
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Rights, education, work & transitions

Disability Advocacy Support Helpline

Australia-wide
Call Disability Gateway on 1800 643 787 for free, short-term individual advocacy by phone. Advocates can help with a disability-related issue for up to three sessions and connect you with local services. NDIS appeal matters are excluded.
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Disability, practical & financial support

Disability Gateway: information and service navigation

Australia-wide
Call 1800 643 787 or search online for disability information, services and programs across health, housing, employment, transport, education, everyday living, finance and legal rights. Staff can help you find relevant national, state and local supports.
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Disability, practical & financial support

Disability Support Guide

Australia-wide
An Australia-wide directory and information guide for people with disability, families and carers. Users can search for disability and NDIS providers, accommodation, equipment, in-home support, therapists and other services by location.
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Down Syndrome Australia

Australia-wide
National advocacy and information for people with Down syndrome and families. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Down Syndrome NSW

NSW
Support and services for people with Down syndrome across NSW. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Research & participation

DS-Connect

International
A voluntary international registry for people with Down syndrome and their families. Participants can contribute health information, explore de-identified community data and choose whether to be contacted about research opportunities.
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Duchenne Australia

Australia-wide
Supports people affected by Duchenne and Becker muscular dystrophy. It provides family support, information, advocacy, community connection and investment in research and improved clinical care.
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Duplication Cares

International
Support and awareness for families affected by 7q11.23 duplication syndrome. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Dystonia Network of Australia Inc.

Australia-wide
Support, information and advocacy for Australians living with dystonia. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Ehlers-Danlos Australia

Australia-wide
Supports people affected by the different Ehlers-Danlos syndromes, hypermobility spectrum disorders and related complications. It provides peer information, community connection and practical resources for individuals and families.
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Support for your community

Embrace Multicultural Mental Health

Australia-wide
A national multicultural mental health resource hub with translated information, culturally responsive resources and guidance on finding support. It is designed for people from culturally and linguistically diverse communities, community leaders and service providers.
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Support for your community

Engaging Aboriginal People in Genomic Healthcare

Australia-wide
Resources that can help Aboriginal and Torres Strait Islander people and health professionals talk together about genetics, testing and healthcare decisions. Includes Clinical Yarning, Finding Your Way, and webinars about genetics and reproductive carrier screening.
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Family, wellbeing & emotional support

ENVISAGE Families

Australia-wide
Free five-workshop program for parents and caregivers of children aged 0–8 with developmental concerns or disability. Online and in-person sessions build confidence, connection and practical skills, and no diagnosis or NDIS plan is needed.
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Support for your community

ENVISAGE First Peoples

Australia-wide
A culturally safe program co-created with mob for Aboriginal and Torres Strait Islander caregivers raising jarjum with developmental concerns or disability. Five yarning circles support wellbeing, culture, family strengths, connection and learning together.
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Fabry Australia

Australia-wide
Support and advocacy for Australians living with Fabry disease. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Research & participation

FaceMatch

Australia-wide
An Australian research platform using computer face-matching, clinical features and genomic data to identify possible matches among children with undiagnosed syndromic intellectual disability. Clinicians, researchers and eligible families can contribute data under research consent.
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Rights, education, work & transitions

Fair Work Ombudsman: flexible working arrangements

Australia-wide
Official guidance for eligible employees, including carers and people with disability, who want to request changes to hours, work patterns or location. It explains who can request flexibility, how employers must respond and available dispute pathways.
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Fanconi Anaemia Support Australasia (FASA)

International
Support and information for families affected by Fanconi anaemia. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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FH Australia

Australia-wide
Awareness and support relating to familial hypercholesterolaemia. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Fibrous Dysplasia/McCune-Albright Syndrome Australia

Australia-wide
Support and advocacy for fibrous dysplasia and McCune-Albright syndrome. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Support for your community

First Peoples Disability Network Australia

Australia-wide
A national organisation led by and for Aboriginal and Torres Strait Islander people with disability. It shares disability and NDIS information, advocates for change, and helps people connect with advocacy support.
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FOP Australia

International
Support, advocacy and research for fibrodysplasia ossificans progressiva. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Family, wellbeing & emotional support

ForWhen

Australia-wide
A national perinatal mental health navigation service for expecting and new parents, carers and families from pregnancy until a baby is 12 months old. Local navigators help callers connect with suitable mental health and wellbeing services.
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Foundation for Angelman Syndrome Therapeutics (FAST)

Australia-wide
Research and advocacy focused on treatments for Angelman syndrome. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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FOXG1 Research Foundation Australia

Australia-wide
Research and family support for FOXG1 syndrome. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Fragile X Association of Australia

Australia-wide
Supports people affected by Fragile X syndrome and Fragile X premutation-associated conditions, including FXTAS and FXPOI. It provides counselling, information, education, advocacy and referrals for individuals and families.
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Friedreich Ataxia Research Association (fara Australia)

Australia-wide
Research and community support for Friedreich ataxia. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Disability, practical & financial support

Friendly Faces Helping Hands Foundation

Australia-wide
Helps rural, regional and remote families navigate travel for specialist healthcare across a wide range of conditions. It provides practical location-based information about accommodation, transport and nearby services.
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FSHD Global Research Foundation

International
Research, education and support for facioscapulohumeral muscular dystrophy. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Research & participation

FSHD Global Research Foundation: Cure FSHD Registry

Australia-wide
An Australian patient-led registry for people living with facioscapulohumeral muscular dystrophy. The Cure FSHD app helps participants build a Clinical Trial Passport, contribute research information and prepare for potential studies and trials.
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Research & participation

Garvan Genomics of Rare Disease Registry

Australia-wide
The Garvan Genomics of Rare Disease Registry is a national online registry for people with a confirmed or suspected rare genetic condition. Participants share health information and may be contacted about relevant research studies or future treatment trials.
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Gaucher Association of Australia & New Zealand

International
Support and information for people affected by Gaucher disease. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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GBS/CIDP Support

Australia-wide
Supports people affected by Guillain-Barré syndrome, CIDP, multifocal motor neuropathy and related immune-mediated neuropathies. It provides peer connection, information and practical support for individuals and families.
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Research & participation

GeneAdd

NSW
GeneAdd is a NSW research program for people with a suspected rare genetic condition who have not received a diagnosis. It helps eligible patients access research that may lead to a diagnosis and support new treatment development.
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Genetics & genetic counselling

GeneEQUAL

Australia-wide
Co-designed Australian program improving genetic healthcare for people with intellectual disability. It provides Easy Read information, videos and decision-support tools for genetic testing, alongside guidance for families, supporters, educators and health professionals.
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Research & participation

GeneSTART

NSW
GeneSTART is a rare disease registry collecting patient-reported outcomes and experiences to improve care and research. Families seen at participating New South Wales hospitals can take part after discussing whether the registry is suitable with their clinician.
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Genetic Alliance Australia

Australia-wide
Supports people and families affected by rare, genetic and undiagnosed conditions across all ages and diagnoses. It provides navigation, information, connection, capacity-building and community-informed advocacy.
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Genetic Cures for Kids (Our Moon’s Mission)

Australia-wide
Advances research for children living with rare and currently incurable genetic conditions, rather than focusing on one diagnosis. It connects families, researchers and supporters to accelerate the development of treatments.
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Genetic Epilepsy Team Australia

Australia-wide
Brings together families affected by different rare genetic epilepsies, including conditions associated with genes such as SYNGAP1, KCNQ2 and SCN2A. It raises awareness and funds precision research.
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Genetic Support Network Victoria (GSNV)

VIC
Supports Victorians affected by genetic, rare and undiagnosed conditions across diagnoses and life stages. It provides information, referral, peer connection, education, advocacy and support for community groups.
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Genetics & genetic counselling

GenoCare

Australia-wide
GenoCare provides counselling and genetics support for individuals and couples starting a family or who are pregnant, including carrier screening, NIPT, ultrasound and prenatal diagnosis results. It combines perinatal counselling with genetic counselling to support informed decisions.
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Research & participation

GenomeConnect

International
An international research registry for people who have had genetic testing. Participants can share de-identified genetic and health information, upload a laboratory report and choose whether to receive updates about research and genetic findings.
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Genetics & genetic counselling

Genomic Health Australia

Australia-wide
A private service providing comprehensive, personalised genetic care for adults, children and families. Its team of clinical geneticists and genetic counsellors offers assessment, genetic testing, help understanding results and guidance on next steps. Services cover rare and undiagnosed conditions, inherited cancer risk, pregnancy and reproductive planning. Telehealth is available across Australia, including regional and remote areas, with in-person appointments in West Leederville, Perth. Consultation fees apply.
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Family, wellbeing & emotional support

Gidget Foundation Australia

Australia-wide
Provides specialist perinatal psychological support for potential, expectant and new parents, including after pregnancy or baby loss and traumatic birth. Services include bulk-billed individual therapy, telehealth, groups and moderated online communities.
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Research & participation

Global Angelman Syndrome Registry

International
A global, Australian-led registry for people with Angelman syndrome. Parents, guardians and adults can contribute health and lived-experience information to support natural history research, study design and the development of treatments.
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Global Genes

International
A global rare disease umbrella organisation offering information, education, advocacy tools, community connections and research-readiness resources for people, families and patient organisations across rare conditions.
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GNAO1 Australia and New Zealand

International
Support and advocacy for families affected by GNAO1-related disorders. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Family, wellbeing & emotional support

Grief Australia: Counselling

Australia-wide
Provides specialist grief and bereavement counselling for individuals, children and families after the death of someone close. Support includes face-to-face services in Victoria and telephone or telehealth options; contact Grief Australia to check availability and fees.
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HAE Australasia

International
Support and education for people living with hereditary angioedema. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Haemochromatosis Australia

Australia-wide
Awareness, education and support relating to hereditary haemochromatosis. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Haemophilia Foundation Australia

Australia-wide
Supports people with haemophilia, von Willebrand disease, rare clotting factor deficiencies and inherited platelet disorders. It provides national information, education, advocacy, research support and community connection.
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Haemophilia Foundation NSW

NSW
Supports people in NSW affected by haemophilia, von Willebrand disease, rare clotting factor deficiencies and inherited platelet disorders. It provides information, peer support, programs and advocacy.
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Pregnancy, family planning & reproductive support

Harrison’s Little Wings

QLD
Supports women and families who receive a poor, life-limiting or fatal diagnosis during pregnancy, or face serious maternal health complications. It provides peer support, practical assistance, information packs and memory-making support.
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HCU Network Australia

Australia-wide
Support, education and advocacy for people affected by homocystinuria. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Family, wellbeing & emotional support

headspace

Australia-wide
Provides mental health, physical health, alcohol and other drug, and work or study support for young people aged 12–25. Support is available through local centres and online and phone services across Australia.
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Rights, education, work & transitions

Health Consumers’ Council WA

WA
Represents health consumers, carers and communities across conditions and service settings in Western Australia. It provides individual advocacy, consumer engagement, training and systemic health advocacy.
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HeartKids

Australia-wide
National support, information and advocacy for children, adults and families affected by childhood-onset heart disease. HeartKids provides peer connection, care guidance and dedicated First Nations resources developed for Aboriginal and Torres Strait Islander families.
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Family, wellbeing & emotional support

HelpingMinds

WA
Free mental health services, education and support for people aged seven and over across Western Australia, including people caring for a family member or friend. Services include counselling, peer support, family support, advocacy and respite pathways.
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Genetics & genetic counselling

HGSA Genetic Counsellor Register and Clinical Genetics Directory

Australia-wide
Searchable national register of genetic counsellors regulated by HGSA, with links to clinical genetics services in each Australian state and territory. People can search by name or location to find appropriately qualified support.
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Disability, practical & financial support

Hidden Disabilities Sunflower for air travel

Australia-wide
Qantas and participating Australian airports recognise the voluntary Hidden Disabilities Sunflower, which discreetly signals that a traveller may need extra help, time or understanding. Free lanyards are available from participating airports, sometimes by advance request.
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Disability, practical & financial support

Housing Hub

Australia-wide
National search platform for Specialist Disability Accommodation, Supported Independent Living, Individualised Living Options and other disability-friendly housing. People and families can search vacancies, create a free seeker profile and contact the NDIS Housing Advice Line.
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HSP Research Foundation

Australia-wide
Research and support for hereditary spastic paraplegia. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Huntington’s Australia

Australia-wide
National advocacy and support for people affected by Huntington’s disease. It also shares trusted information, connects people with relevant resources and brings community experience into awareness, policy and service improvement.
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Huntington’s Victoria

VIC
Support and services for Victorians affected by Huntington’s disease. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Research & participation

Hypersomnolence Australia: Idiopathic Hypersomnia Patient Registry

International
A patient registry for people in Australia and New Zealand diagnosed with idiopathic hypersomnia. Participants contribute information about diagnosis, symptoms, treatment and daily life to help build evidence for research, services and advocacy.
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Support for your community

IG-HeLP – Your Blood, Your Story

Australia-wide
Watch Your Blood, Your Story, a short video developed through IG-HeLP to help Aboriginal and Torres Strait Islander people learn about DNA, genes and genetic health in clear language. The video is free to view online.
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Immune Deficiencies Foundation Australia (IDFA)

Australia-wide
Supports people with primary immunodeficiencies, secondary immunodeficiencies and related immune conditions. It provides information, peer connection, advocacy and support to navigate diagnosis, treatment and daily life.
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Inherited Cancers Australia

Australia-wide
Free support for people and families navigating inherited cancer risk, including access to a certified genetic counsellor, peer mentoring, private online support groups and community connection. The service also helps people understand testing, screening, risk management and care pathways.
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Support for your community

Integrated Team Care program

Australia-wide
Integrated Team Care supports Aboriginal and Torres Strait Islander people with complex chronic conditions. Regional care coordinators and outreach workers can connect health services, arrange care, support understanding and management, and sometimes help with transport or approved medical aids.
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Family, wellbeing & emotional support

Intellectual Disability Mental Health Connect

NSW
Provides accessible mental health information and service guidance for people with intellectual disability, their families, supporters and health professionals. The website is designed for NSW, although people elsewhere may also use its information.
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Support for your community

InterAction for Health and Human Rights

International
InterAction promotes the health, human rights, bodily autonomy and self-determination of people with innate variations of sex characteristics. It provides information, advocacy, community programs and support pathways for individuals and families across Australia.
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Family, wellbeing & emotional support

InterLink

International
InterLink provides professional and peer-led psychosocial support for people of any age with innate variations of sex characteristics, as well as parents, carers and families. It offers individual counselling, groups, peer navigation and a dedicated resource hub.
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International FOXP1 Foundation

International
Provides information, resources and global community connection for people with FOXP1 syndrome and their families, including support for newly diagnosed families, family stories, research updates, events and opportunities to participate in research.
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Support for your community

Intersex Peer Support Australia and Aotearoa (NZ)

International
Supports people with diverse innate variations of sex characteristics and their families across Australia and Aotearoa New Zealand. It provides peer support, information, advocacy and community connection.
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ITP Australia and New Zealand

International
Provides current information, support and advocacy for people living with immune thrombocytopenia, their families and health professionals across Australia and New Zealand. It runs patient education, community connection and awareness initiatives.
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Jack’s Butterflies

Australia-wide
Supports families caring for children with disability, rare disease, complex medical needs or life-limiting conditions. It provides practical assistance, respite-related support, advocacy and opportunities for family connection.
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Rights, education, work & transitions

JobAccess

Australia-wide
Australian Government hub providing free disability employment advice and services. It helps people find or keep work, locate Inclusive Employment Australia providers, access workplace adjustments and understand employment rights and available financial support.
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Disability, practical & financial support

Julian’s Key Health Passport

QLD
A free Queensland health passport that records a person’s communication, support and care needs to help healthcare staff provide safer, more person-centred care. Printed and digital versions are available, including translated and Auslan resources.
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Kennedy’s Disease Downunder

Australia-wide
Peer support for Australians and New Zealanders affected by Kennedy’s disease. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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Family, wellbeing & emotional support

Kids Helpline

Australia-wide
Provides free, confidential counselling for children and young people aged 5–25, together with support information for parents and carers. Counsellors are available across Australia by phone, webchat and email.
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Disability, practical & financial support

Kiind

WA
Family-led Western Australian organisation providing free support for families raising children and young people with disability, developmental delay, autism, rare, genetic, undiagnosed or chronic conditions. Services include peer navigation, parent groups, hospital support, information and an online family network.
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Support for your community

Kin Disability Advocacy

WA
Free, independent disability advocacy for Western Australians who experience cultural or language barriers. Kin supports people in metropolitan, regional and remote areas to understand rights, resolve problems, prepare for meetings and make complaints.
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Leukodystrophy Australia

Australia-wide
Supports people affected by the many inherited and acquired leukodystrophies and related white matter disorders. It provides information, advocacy, family support, community connection and research updates.
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Family, wellbeing & emotional support

Lifeline Australia

Australia-wide
Provides free, confidential crisis support for people experiencing emotional distress or feeling unable to stay safe. Trained crisis supporters are available across Australia by phone, text and online chat, 24 hours a day.
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Family, wellbeing & emotional support

Little Dreamers Australia

Australia-wide
Supports young carers aged 4–25 through coaching, peer support, tutoring, holiday programs and practical assistance. Young people can apply for support directly, with program availability varying by location and funding.
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Liver Foundation

Australia-wide
Supports people affected by liver conditions, including inherited, metabolic, autoimmune, infectious and other liver diseases. It provides information, awareness, advocacy, prevention initiatives and support for research.
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Family, wellbeing & emotional support

Livewire

Australia-wide
A free, moderated online community for young people aged 12–20 living with chronic health conditions, disability or serious illness, and their siblings. It offers peer connection, activities and support across Australia and New Zealand.
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Lung Foundation Australia

Australia-wide
Supports people living with a broad range of lung diseases, including rare lung conditions such as pulmonary fibrosis, bronchiectasis and LAM. It provides information, support programs, advocacy and research.
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Lupus Association of NSW

NSW
Provides information, counselling, support and networking for people affected by lupus and related connective tissue diseases, primarily in New South Wales. It also raises awareness, supports research and advocates for better care.
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Lynch Syndrome – Cancer Council Victoria

Australia-wide
Current information and support for people and families affected by Lynch syndrome, now hosted by Cancer Council Victoria following the merger with Lynch Syndrome Australia. Resources explain inherited cancer risk, screening and pathways to further help.
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Maddie Riewoldt’s Vision

Australia-wide
Supports research and people affected by bone marrow failure syndromes, including aplastic anaemia, myelodysplastic syndromes and paroxysmal nocturnal haemoglobinuria. It provides information, advocacy and family support.
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Malan Syndrome Foundation

International
Support, information and research for the Malan syndrome community. Its work also includes accessible information, awareness and opportunities for individuals and families to connect with relevant research and community resources.
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Marfan Association Queensland

QLD
Peer support for Queenslanders affected by Marfan syndrome. It helps individuals and families find trusted information, connect with others who understand and identify relevant services, resources and opportunities.
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