The ARRK website and database is supported by the following groups;
Alport Foundation of Australia
The Alport Foundation of Australia aims to raise awareness of Alport syndrome in the hope that a greater number of patients and their families will become aware of this genetic kidney disease sooner than they might have otherwise. This will allow people to take steps to slow down their decline and find out information about emerging preventative treatments under the guidance of clinicians and researchers.
For more information about The Alport Foundation of Australia, please click the following link (http://www.alport.org.au) or go to their facebook page (https://www.facebook.com/AlportFoundationOfAustralia).
Australian Cystinosis Support Group
The Australian Cystinosis Support Group provides information for family and friends living with Cystinosis. Cystinosis is a rare metabolic condition that results in the build-up of the amino acid cystine in different organs in the body including the kidneys. Cystinosis is passed on through autosomal recessive inheritance.
For more information about the Australian Cystinosis Support Group, please click the following link (http://www.cystinosis.com.au/) or go to their facebook page (https://www.facebook.com/pages/Cystinosis-Support-Group-Australia/196784193691484).
Centre for Genetics Education (CGE)
The Centre for Genetics Education (CGE) is committed to helping health professionals manage the impact of genetic and genomic technologies in their practice to ensure best patient care. CGE is funded as a state-wide service by the NSW Ministry of Health (Australia). A key component of the Centre’s work is the development, production and dissemination and evaluation of print, audiovisual and online resources related to genetics information aimed at individuals and family members affected by, or at risk of, a genetic condition. CGE provides a central point in NSW for both patients and health professionals to access information about genetic services, genetic information and conditions and related educational resources.
For more information about the Centre for Genetics Education, please click the following link (www.genetics.edu.au)
The KidGen Collaborative is an Australian-based consortium of clinicians, genetic counsellors, genetic diagnosticians and researchers. The group is focused on providing a definitive diagnosis to patients with inherited forms of kidney disease in a supportive patient setting.
Through the KidGen multidisciplinary clinics, currently operating in 14 public hospitals across Australia, we are working to provide equitable access to genomic technology for Australian families. At the same time, we are working to better understand these diseases in the hope of developing new treatments.
For more information about Kidgen, please click the following link (www.kidgen.org.au).
Kidney Health Australia (KHA)
Kidney Health Australia (KHA) was established in 1968 as the Australian Kidney Foundation. KHA is a national not-for-profit organisation dedicated to improving health outcomes and quality of life for people living with kidney disease, their families and carers.
KHA mission: To promote good kidney health through education, advocacy, research and support.
Education – encompassing all aspects of education for both health professionals looking after those with kidney disease and the community at risk of, or with kidney disease.
Advocacy – collaborating to seek solutions to the gaps in care for those with kidney disease in order to improve health outcomes.
Research – KHA Research.
Support – providing support programs for those with kidney disease.
KHA vision: To save and improve the lives of those Australians affected by kidney disease.
For more information about Kidney Health Australia, please click the following link (http://kidney.org.au/) or go to their facebook (https://www.facebook.com/KidneyHealthAust) or twitter @KidneyHealth page.
PKD Foundation Australia
Raises funds to support research into finding a cure for Polycystic Kidney Disease (PKD). Already provided funding to 8 researchers in Australia & New Zealand and will be co-funding a large research grant with US PKD support.
Connects, supports and advocates for families affected by PKD by holding seminars throughout Australia where scientists, clinicians, allied health professionals and patients can discuss new developments, current research and all issues of importance to PKD patients and their families
Provides practical resources, details about latest PKD news and PKD community information through their website.
Collaborates with KHA and other interested support groups for the benefit of the PKD community.
For further information about the PKD Foundation Australia, please click the following link to their website (http://www.pkdaustralia.org/) or go to their facebook (https://www.facebook.com/PKDFoundationAustralia/) or their twitter page (@PKD_Australia).
Siblings Australia supports siblings of people with chronic conditions including chronic illness, disability and mental health issues. The Siblings Australia website provides information about support for siblings, including services, resources, research and policy.