Links to Useful Internet Resources
Alpha-1 Antitrypsin Deficiency (A1AD).
- Alpha-1 Association of Australia (AAA)
The Alpha-1 Association of Australia is an organisation dedicated to the help and support of Australians who are affected by and interested in Alpha-1 Antitrypsin Deficiency (A1AD).
Asthma
- Asthma Australia
Asthma Australia is an association of all the Asthma Foundations throughout Australia. The Asthma Foundations exist to provide asthma education, information, research, community advocacy and support to people with asthma and their carers. For more information click on the link or telephone 1800 645 130. - Asthma Australia has recently released new resources for patients and asthma education. Please find more information here. (June 2011)
- National Asthma Council
The National Asthma Council Australia is a not-for-profit body serving the community by creating awareness and providing information about asthma.
Cancer
- Cancer Answers - The Cancer Council NSW
This site is designed to guide the consumer with questions and answers - about cancer services and the various stages of the cancer journey - presented in a logical and easy-to-read format.
Chronic Obstructive Lung Disease (COPD)
- The Australian Lung Foundation
The Australian Lung Foundation is a not-for-profit, public benevolent institution with medical and support group representation in every state and territory in Australia. It offers a reliable source of lung health information. For information and patient support call 1800 654 301 (Monday to Friday)
Cystic Fibrosis
- Cochrane Cystic Fibrosis and Genetic Disorders Review Group
The Cochrane Cystic Fibrosis & Genetic Disorders Review Group comprises an international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders.
There are several resources available for consumers with the Cochrane Cystic Fibrosis & Genetic Disorders Review Group, for example, a group-specific glossary, which contains many of the medical terms used in Cochrane reviews as well as a glossary containing research and statistical terminology available both online or as a pdf file as part of the Cochrane Handbook for Systematic Reviews of Interventions. - Cystic Fibrosis Australia
Cystic Fibrosis Australia assists member organisations to achieve common objectives by developing national education programs and collecting and distributing information about Cystic Fibrosis (CF) at national and international levels. CF State/Territory Organisations have a number of support programs available to assist to children and young adults with CF and their families.
Dust Diseases
- Workers' Compensation Dust Diseases Board of NSW
This website has been developed to help users and their families better understand the role of the Dust Diseases Board and the compensation process.
General Consumer Information
- National Heart, Lung and Blood Institute (NHCBI) (US Site)
For health professionals and the public, the National Heart, Lung, and Blood Institute (NHLBI) conducts educational activities, including development and dissemination of materials in the above areas, with an emphasis on prevention.
Intensive Care / Critical Care
- Respecting Patient Choices
A resource for up to date information around advance care planning including the relevant forms for members of the public to download. Advance care planning is a process enabling a patient to make decisions about his or her future health care in consultation with their health care providers, family members and other important people in their lives.
LAM
- LAM Australasia Research Alliance (LARA)
LARA provides information and support for Australian and New Zealand women diagnosed with LAM. LARAs objectives are:- To provide support for women diagnosed with LAM and their families
- To become the source of information for women with LAM
- To publish educational materials on LAM for all interested individuals
- To raise awareness of LAM and to improve early detection and diagnosis
- To maintain a database of persons throughout the country who have LAM
- To foster and fund research aimed at finding a cause of and cure for LAM and ultimately, preventative measures
- To sponsor conferences, workshops and scientific meetings related to LAM
- To raise money to support the goals
- The NZ LAM Charitable Trust
Established in Auckland in 1999, the New Zealand LAM Trust is one of a number of patient and family organisations around the world working alongside scientists, clinicians and researchers, raising awareness about the disease Lymphangioleiomyomatosis and helping raise funds to support research into its cause and ultimately its cure.
Research
- The Australian Respiratory Council
The Australian Respiratory Council is a charity organisation supporting prevention, treatment and research into respiratory disease at a national and international level. ARC's mission is to develop and support innovative and effective approaches to research and development in lung health and to improve lung health in communities, with emphasis on disadvantaged groups.
- The Lung Institute of Western Australia
LIWA is a charitable organisation and is one of only two research institutes in Australia dedicated specifically to investigating lung disease.
- National Health and Medical Reseach Council
NHMRC is Australia's peak body for supporting health and medical research; for developing health advice for the Australian community, health professionals and governments; and for providing advice on ethical behaviour in health care and in the conduct of health and medical research. - National Insititute of Allergy and Infectious Diseases (NIAID)
The National Institute of Allergy and Infectious Diseases (NIAID) conducts and supports basic and applied research to better understand, treat, and ultimately prevent infectious, immunologic, and allergic diseases. For more than 50 years, NIAID research has led to new therapies, vaccines, diagnostic tests, and other technologies that have improved the health of millions of people in the United States and around the world.
Other Diseases
- Cochrane Cystic Fibrosis and Genetic Disorders Review Group
- National Heart, Lung and Blood Institute (NHCBI) (US Site)
Sleep
- Australasian Sleep Association
The mission of the ASA is to lead, coordinate and enable the educational, research, and social activities of healthcare professionals in the sleep medicine field across Australia and New Zealand, with the purpose of promoting our vision of a society that recognises the importance of good sleep to health, public safety and quality of life. - Sleep Health Foundation
A-Z Facts about Sleep - http://www.sleephealthfoundation.org.au/brochures.html
Sleep tips - http://www.sleephealthfoundation.org.au/tips-facts.html
Tuberculosis (TB)
- International Union Against Tuberculosis and Lung Disease
The Union has as its mission the prevention and control of tuberculosis and lung disease, as well as related health problems, on a world wide basis, with a particular emphasis on low income countries. Its goal is to promote national autonomy within the framework of the priorities of each country by developing, implementing and assessing anti-tuberculosis and respiratory health programmes.
Tobacco
- Quit Smoking
Call the Quitline on 131 848 or go online to the Quitters Page which includes details of telephone help support, quit booklets and an on-line interactive Quit Coach.
Tuberous sclerosis
- Tuberous Sclerosis Alliance (US Site)
The Tuberous Sclerosis Allianceis a US membership-based organization whose mission is to improve the quality of life for individuals and families affected by tuberous sclerosis complex through the stimulation and sponsorship of research, the development of programs, support services and resource information, and the development and implementation of public and professional education programs designed to heighten awareness of TSC.
