Patient Support Groups


Patient supports groups allow you to connect with other people who have a rare or genetic kidney disease and to learn more about your disease and to share stories with others.


Following is a list of patient support groups that you may be interested in connecting with;

aHUS Patient Support Group Australia is a facebook group set to support those living with or caring for those with atypical Heamolytic Uraemic Sydnrome (aHUS). (

Alport Foundation of Australia raises awareness of Alports syndrome for patients and their families (

Australian Cystinosis Support Group provides information and supports family and friends living with Cystinosis (

Australian Rare Chromosomal Awareness Network (ARCAN) is a website created by parents to support patients with rare chromosomal disorders (

Genetic Alliance Australia assists families with rare genetic conditions/disease to connect to other families (

Genetic and Rare Disease Network (GaRDN) provides information and support to individuals and families living with a rare or genetic condition (

Kidney Health Australia (KHA) – Kidney Club provides support for children living with chronic kidney disease (

Kidney Kids NZ (New Zealand) is a parent driven organisation to support kids with kidney disorders and their families (

PKD Foundation of Australia provides information and support for patients and their families with polycystic kidney disease (PKD) (

PKD Charity UK supports those affected by PKD, their carers and families (

Rare Connect allows rare disease patients, families and communities to connect with each other through online communities and conversations (

Rare Voices Australia supports people living with a rare disease (

Siblings Australia supports siblings of adults or children with chronic conditions (

Syndrome without a Name (SWAN) provides information and support for patients with a rare genetic condition that is undiagnosed (

Steve Waugh Foundation supports children and young adults living with a rare disease by providing grants, respite camps, research and awareness (


This page was last updated on 24th Oct, 2018.