Third-party organisations and support for non-MCAD conditions (Australia & Aotearoa New Zealand)
People living with mast cell activation disorders may also experience comorbid conditions, or may at times require specialised support and advocacy in areas of care that fall outside TAMS’ scope.
The following alphabetised list of third-party organisations may offer helpful information, community support and condition-specific guidance for those who suspect or have confirmed comorbid conditions and their carers.
Note: The below list does not include 24/7 mental health crisis services. Mental health phone and text line information for Australia and Aotearoa New Zealand is available on our mental health resources page.
Australia
Allergy & Anaphylaxis Australia (A&AA)
Provides evidence-based information, advocacy, and practical support for people living with food allergies, anaphylaxis, and intolerances.
Allergy and Environmental Sensitivity Support and Research Association
A Melbourne‑based support group for individuals with allergies and sensitivities, including Multiple Chemical Sensitivity.
Allergy Life Australia
Provide information, support, care and access through a range of modern initiatives to improve the lives and lifestyles of Australians living with allergies.
Allergy 250K
Provides age-appropriate information and resources to assist young people living with severe allergies and help them feel more connected to other teens and young adults going through similar experiences in a fun yet informative way.
Australian Federation of Disability Organisations – Disability Advocacy Organisations Resource List
Provides a comprehensive list of disability advocacy and support organisations across Australia, including national peak bodies and state- and territory-based groups.
Asthma Australia
Offers expert asthma management, treatment tips, inhaler guides and support.
ausEE Inc.
Working to improve the lives of those affected by eosinophilic diseases by providing support, evidence-based information, resources, and advocacy, and by campaigning to raise awareness and funds for research in Australia.
Australian POTS Foundation
The national patient-led organisation supporting people with postural orthostatic tachycardia syndrome. It works to improve diagnosis, treatment, and understanding of POTS, build a connected community of support, and advocate for better access to care and lasting health policy change.
Australian National Register of Environmental Sensitivity
A register of Australians living with Environmental Sensitivities. This organisation aims to support communications about collective needs to policy and decision makers. Also supports people with Electromagnetic Hypersensitivity.
Carer Gateway
Is an Australian Government program providing free services and support for carers.
Chronic Pain Australia
Chronic Pain Australia is a national consumer organisation that supports people living with chronic pain through awareness, advocacy and community-based support.
Coeliac Australia
Supports individuals with coeliac disease and gluten-related disorders, offering evidence-based information, dietary guidance and peer support.
Connective Tissue Disorder Network Australia
The national voice and peak body for people affected by heritable connective tissue disorders, driving advocacy, education, and collaboration.
Crohn’s and Colitis Australia
The national support, advocacy and information organisation for people living with inflammatory bowel diseases (IBD), including Crohn’s disease and Ulcerative colitis.
Disability Gateway
Find disability advocates in your state.
Eczema Association of Australasia
Provides support, education and resources for people living with eczema across Australia.
Emerge Australia (ME/CFS)
Emerge Australia is the national organisation supporting people with ME/CFS and long COVID. They focus on improving quality of life through education, advocacy, research and patient support, including information, online education and a national support line.
Fibromyalgia Australia
Provides information and peer support for people living with fibromyalgia and widespread chronic pain.
Genetic Alliance Australia
Offers support and advocacy for people living with rare, genetic and undiagnosed conditions. Helpful for individuals with hereditary MCADs or uncertain diagnoses.
Healthy Bones Australia
A national, not-for-profit organisation focused on preventing osteoporosis and reducing fracture risk. It provides clear, evidence-based resources on calcium, vitamin D, exercise and bone health, along with tools to help individuals understand and manage their personal risk.
The Inside Story
A group run by the Western Sydney University School of Medicine to raise awareness about chronic gastrointestinal motility disorders and to provide support for Australian patients, their families and their friends.
Lung Foundation Australia
Lung Foundation Australia is the national organisation supporting people with lung disease and lung cancer. They provide information, support services and research funding, and advocate for better lung health, earlier diagnosis and equitable access to treatment and care.
People with Disability Australia
Provides information on disability rights, navigating support systems and accessing reasonable adjustments.
RARE Portal
A nationally coordinated online resource for people living with rare diseases in Australia
The Safer Air Project
Advocating for cleaner indoor air and providing practical resources to support safer, more inclusive environments.
Toxic Mould Support Australia
Raises awareness throughout Australia and Aotearoa New Zealand of chronic inflammatory response syndrome (CIRS), and other mould-related illnesses, and to provide support to patients.
UDN-AUS
Intended for individuals living with undiagnosed rare diseases who have had all available genetic/genomic testing through their local Genetics Service and remain undiagnosed. The genetic information from their previous testing will be reanalysed by their clinicians and further testing will be arranged as needed, with consent of the participant and/or their family.
Aotearoa New Zealand
Allergy NZ
Provides reliable information, education and support to help New Zealanders manage allergies and live healthy, active lives.
Asthma New Zealand
Dedicated to ensuring Kiwis thrive despite Asthma and Chronic Obstructive Pulmonary Disease.
Asthma and Respiratory Foundation NZ
Supports the development of respiratory health knowledge in New Zealand and provides information, education and resources for people living with asthma, chronic obstructive pulmonary disease and other respiratory conditions.
CCS Disability Action
Supports people with all types of impairments through services, advocacy and information, partnering with disabled individuals and their whānau to promote choice, control and full inclusion in their communities.
Coeliac New Zealand
Supports those diagnosed with coeliac disease, dermatitis herpetiformis and those on a gluten-free diet.
Chronic Illness Carers NZ
Supports people who live with complex chronic illnesses to improve the quality of life of these people and their loved ones.
Crohn’s and Colitis NZ
Works across the country to improve the lives of people affected by IBD.
Eczema Association of Australasia
Provides support, education and resources for people living with eczema across Australia.
Eczema Association of New Zealand
Dedicated to eczema sufferers in New Zealand.
Ehlers-Danlos Syndromes Aotearoa New Zealand
Supports people with Ehlers-Danlos syndromes and hypermobility spectrum disorders in Aotearoa New Zealand through awareness, improved clinical understanding and patient support.
Health and Disability Advocacy Service
Provides free support with health or disability complaints, Rights information, empowerment and education.
Health and Disability Commissioner
The Nationwide Health and Disability Advocacy Service is a free service that operates independently from all health and disability service providers.
Lyme Disease Association of Australia
Australia’s peak patient body for tick-borne diseases.
ME Support
Helps New Zealanders with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Long COVID and their whānau or carers.
Osteoporosis New Zealand
Dedicated to improving bone health and preventing fragility fractures nationwide.
Rare Disorders NZ
The collective voice of all people living with a rare disorder and their whānau.
Toxic Mould Support Australia
Raises awareness throughout Australia and Aotearoa New Zealand of chronic inflammatory response syndrome (CIRS), and other mould-related illnesses, and to provide support to patients.
