Livewire is an online community for teenagers between 12-20, living with a serious illness, disability or chronic health condition. It is available to young people living in Australia and New Zealand and helps them to feel connected, supported and more positive about their future. Visit livewire.org.au or livewire.org.nz for more information.
Provides short term telephone and email counselling through Blue Knot Helpline (available 9am to 5pm AEST Monday to Sunday via telephone 1300 657 380, or email helpline@blueknot.org.au), diverse education and training workshops, supervision and organisational consultancy.
Spreads awareness of Addison’s Disease and educates the public and medical profession to aid diagnosis; which is often difficult to achieve.
Genetic Alliance Australia is a tax-deductible registered charity formed in 1988 to provide peer support and information for individuals and families affected by a rare diseases, 80% of which are genetic in origin. Genetic Alliance Australia (GA-AU) is a peak umbrella group for rare genetic conditions/diseases, so rare they do not have their own support group. GA-AU will endeavour to facilitate contact with another family/individual affected by the same, or similar condition, and/or provide information about an overseas support group. Genetic Alliance also deals with enquiries and facilitates ongoing support for individuals, families, health professionals and other interested groups. GA-AU’s Filling the Void Project supports people living in isolation who are caring for someone with a genetic condition.
Genetic Alliance Australia has an extensive rare disease database representing 1300 conditions which enables us to put people in contact with others who have the same or similar conditions. We work alongside genetic services, allied health professionals and support organisations.
Genetic Alliance Australia is funded by NSW Health and Family and Community Services. We were successfully accredited in accordance with the requirements of the NSW Disability Services Standards in June 2015.
The Mito Foundation Support Network facilitates connections between people affected by mitochondrial disease (mito). The network makes it easy to reach out and find support from someone who understands what it is like to live with this complex condition.
It consists of patients and carers who are happy to be contacted by others in a similar situation. It includes details, such as their name, age, location, connection to mito and their contact details.
To fund research to accelerate the discovery of better diagnostic techniques, tailored treatments, and ultimately, a cure for LAM; improve doctors and allied health professionals’ knowledge of LAM; and support women living with LAM.
A national, non-profit organisation of parents, professionals and community members working together to ensure the emotional and social needs of children, adolescents and their families are met within hospitals and the health care system.
National service provider; offers face to face, telephone or online support to those living with epilepsy or caring for someone with epilepsy. Provide information, self-management support, workshops, seminars, camps and accredited training.
Provide support through contact with people with CMT; Distribution of information related to the welfare of people with CMT; Promote the development of facilities and services for people with CMT; Actively support CMT research.
A member-based organisation for thyroid patients and their families, which provides support, information and education. Raises
awareness throughout Australia community about the benefits of Good Thyroid Health and How to Achieve It.
Improve knowledge and understanding about chronic pain across Australia, Promote better understanding amongst health professionals about what it is like to live with chronic pain; and Work towards supported self-management of pain.
Tuberous Sclerosis Complex (TSC) affects more than 2000 individuals in Australia and thousands more carers, families and friends who live with the impact of the disease.
TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC, but with appropriate support most people with TSC can live fulfilling lives.
Tuberous Sclerosis Australia empowers people affected by TSC through access to the best treatment options, up to date information and support. TSA was previously The Australasian Tuberous Sclerosis Society (ATSS)
- To educate and support patients and families with vitiligo in Australia.
- To promote research into the pathophysiology (cause) of vitiligo, treatments of the condition and patient care.
- To eliminate or minimise the social stigma of vitiligo.
- To increase public awareness of vitiligo through charity events such as fun runs and charity dinners.
- To assist in the development of international collaboration in areas of vitiligo education, research and services.
- To represent Australia at international forums on vitiligo.
- To assist in the area of health policy and planning and to advocate on behalf of people with vitiligo for the improvement of services and health care benefits.
- Members discounts such as discounted prescription products (0.1% tacrolimus cream/ointment or 20% Monobenzyl ether of hydroquinone.)
Miracle Babies Foundation NurtureGroups are free play and support groups for families who have experienced the birth of a premature or sick newborn. We offer a safe and secure environment for children 0 to 6 years who have been challenged by prematurity or sickness in which they can learn and develop through play, whilst offering families ongoing parent support after leaving the safety of a NICU/SCN.
Parents and carers can exchange ideas on parenting, tackle medical issues, share stories, build support networks, form friendships and ease the isolation that can often be felt by families of premature and sick newborns.
Perth – WA group meets 4 times a month, for more info about meetings call 1300 622 243
Provides support and educational information to parents and carers of children born with Hirschsprung’s disease or imperforate anus. Conferences, newsletters and an online private Facebook site.
To Provide assistance and information to those affected by Leukodystrophy and to support research into Leukodystrophy.