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). (https://www.facebook.com/pg/AhusPatientSupportGroupAustralia/about/)

Alport Foundation of Australia raises awareness of Alports syndrome for patients and their families (http://www.alport.org.au)

Australian Cystinosis Support Group provides information and supports family and friends living with Cystinosis (https://www.facebook.com/Cystinosis-Support-Group-Australia-196784193691484/International)

Australian Rare Chromosomal Awareness Network (ARCAN) is a website created by parents to support patients with rare chromosomal disorders (http://www.arcan.org.au/)

Genetic Alliance Australia assists families with rare genetic conditions/disease to connect to other families (http://www.geneticalliance.org.au/)

Genetic and Rare Disease Network (GaRDN) provides information and support to individuals and families living with a rare or genetic condition (http://www.geneticandrarediseasenetwork.org.au/)

Kidney Health Australia (KHA) – Kidney Club provides support for children living with chronic kidney disease ( http://kidney.org.au/connect/support-groups/community-support/kidney-club)

Kidney Kids NZ (New Zealand) is a parent driven organisation to support kids with kidney disorders and their families (http://www.kidneykids.org.nz/)

PKD Foundation of Australia provides information and support for patients and their families with polycystic kidney disease (PKD) (http://pkdaustralia.org/)

PKD Charity UK supports those affected by PKD, their carers and families (http://www.pkdcharity.org.uk/)

Rare Connect allows rare disease patients, families and communities to connect with each other through online communities and conversations (https://www.rareconnect.org/en)

Rare Voices Australia supports people living with a rare disease (https://www.rarevoices.org.au/)

Siblings Australia supports siblings of adults or children with chronic conditions (http://siblingsaustralia.org.au/)

Syndrome without a Name (SWAN) provides information and support for patients with a rare genetic condition that is undiagnosed (http://swanaus.com.au/)

Steve Waugh Foundation supports children and young adults living with a rare disease by providing grants, respite camps, research and awareness (http://www.stevewaughfoundation.com.au/)

 

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