​Alport Foundation of Australia

Join the Alport Foundation Community to be connected with other patients and families, and to receive updates about research progress and the foundation's activities.​​

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Website: https://alport.org.au

You can register for community membership using the online form on the Home page.

Stay informed : https://www.facebook.com/AlportFoundationOfAustralia

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Alport Syndrome Foundation (USA)

The Alport syndrome Foundation is a patient lead non-profit support group based in Arizona. They are dedicated to improving the outcomes for Alport patients.​

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https://alportsyndrome.org

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Alport UK

Alport UK is a patient lead non-profit support group. They host many webinars and an informative YouTube channel featuring recorded online discussions with leaders in Alport syndrome research from around the world. The channel also features patient interviews discussing living with Alport syndrome. Alport UK are instrumental in the organisation of annual international conferences which gather together doctors, researchers, patients and Alport support groups from around the world.

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https://alportuk.org

Link to the Alport UK video channel: https://www.youtube.com/channel/UC_QpiV_A0S4_FBpSS3tpAwQ/videos?view=0

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Alport Syndrome News

The Alport Syndrome News is a USA based news and informations website based in Pensacola, Florida. They provide information about disease management, symptoms, causes, diagnosis, treatments and current research.

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https://alportsyndromenews.com/​

 

KIDNEY HEALTH AUSTRALIA

Kidney Health Australia is fighting for the future. KHA are looking towards ending dialysis by 2050. They are working with the community and industry to find better solutions, to put kidney disease on the radar of politicians and change the diagnosis and treatment of kidney disease. 

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KHA's factsheet for Alport syndrome: https://assets.kidney.org.au/resources/KHA-Factsheet-Alport-Syndrome-2020.pdf

KHA's website provides information on all kidney health issues, fact sheets, dietary advice, recipe books and more. 

KHA website: https://kidney.org.au

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KIDGEN

KIDGEN is a collaborative formed in 2017 to improve care outcomes for genetic kidney disease (GKD). KIDGEN is focused on promoting and improving access to genetic diagnosis for as many people as possible, through cutting-edge research and collaboration with genetics laboratories within Australia and overseas.

 

Visit the KIDGEN patient page for participating clinics around Australia and links to information regarding genomic sequencing.

 

KIDGEN website: https://www.kidgen.org​

 

 

BEAT CKD

Better Evidence and Translation – Chronic Kidney Disease (BEAT-CKD) began as a collaborative research network aiming to improve the lives of people living with chronic kidney disease. Their aim is to generate high-quality research evidence to help patients, health professionals, and policy makers make informed decisions about healthcare.

 

BEAT CKD website: https://beatckd.org

 

 

HGSA

The Human Genetics Society of Australasia facilitates support for those affected directly or indirectly by genetic condition throughout Australasia. They have built up a contact register with over 850 genetic conditions plus 250 rare chromosome abnormalities.

 

Visit the HGSA website: https://www.hgsa.org.au

 

 

Centre for Genetics Education

The Centre for Genetics Education provides current and relevant genetics information, enabling health professionals to improve treatment outcomes for individuals and family members affected by genetic conditions. The Centre is a division of the NSW Health Education& Training Institute (HETI), and is based at St Leonards, NSW. The Centre’s research and educational activities aim to bring genetics information to the widest audience possible.

https://www.genetics.edu.au

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