Fabry Australia is a National patient organisation, founded by Fabry families in 1994. It represents over 200 families affected by Fabry disease. Fabry Australia is a registered charity supported by voluntary donations, education grants, fundraising and is managed by a part time staff member and governed by a management committee.
Flinders Human Behaviour & Health Research Unit
AGSA, a peak body providing peer support /information to people affected directly or indirectly by rare diseases (80% of which are genetic). AGSA lobbies Government on issues relating to rare diseases and runs support services for carers. AGSA holds the largest rare disease register in the region and is recognised nationally and internationally.
The Genetic Support Network of Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people touched by genetic conditions. The Network is proud to be associated with a wide range of support groups thr
National support, advocacy and health promotion group for people with the genetic condition haemochromatosis (inherited iron overload disorder).
The Health Care Consumers' Association of the ACT (HCCA) was formed in 1978 by concerned ACT health care consumers to provide a voice for consumers on local health issues. HCCA aims to be a means for health care consumers to participate in policy, planning and service decisions that affect their health. It does this by working with health providers to achieve services that are responsive, respectful, accessible and affordable to all; encouraging direct consumer involvement in health decision making; and lobbying and advocating on behalf of ACT health care consumers.
Health Consumers Alliance of South Australia aims to provide a strong, independent, effective voice for health consumers in SA.
Health Consumers NSW represents the interests of patients, carers and their families in NSW. We believe in shaping a health system that listens to, respects, partners with and values health consumers. We are a not-for-profit organisation and registered health charity.
Health Consumers Queensland (HCQ) acts as a statewide, peak health consumer body to provide information and advice from a consumers (patients) perspective to shape health policy, systems and service reform. HCQ supports consumer, community and patient involvement in all aspects and stages of their individual and collective health care journey.
Health issues Centre is a non-government, health policy/research centre which recommends improvements to the health system from the perspective of consumers. It aims to create a more equitable health care system which is more responsive to users, particularly those who are disadvantaged by current arrangements.
Supported by cardiologists, hearts4heart is a national not-for-profit & peak body that supports, educates & advocates for those living with heart disease.
Hepatitis Australia provide a national leadership and advocacy on viral hepatitis. They support partnerships for action to ensure the needs of Australians affected by or at risk of viral hepatitis are met.
Inclusion Australia - NCID
Jean Hailes for Women's Health
Limbs 4 Life provides information and support to amputees, their families and primary caregivers while promoting an inclusive community.
Their activities include raising awareness through seminars, conferences, campaigns and advertising; and engaging with medical professionals and their associations, Government, charities and other organisations to advocate for families with Lynch syndrome.
Macular Disease Foundation Australia
The Maternity Coalition is Australia's National Maternity Consumer Organisation. We believe that birth matters in Australia today.
The ME/CFS/FM Association - Queensland provides information, support and counselling to patients with chronic fatigue syndrome/fibromyalgia and their carers, and raises funds for medical research into the illnesses.