Parents Portal: Resources for Parents & Families












  • NORD  National Organisation for Rare Disorders:  US based site with extensive information, tools and resources for clinicians, researchers and patients/carers

  • Centre for Genetics Education  NSW Health web portal for  health professionals and patients focussed on genetic conditions; provides fact sheets and guidelines

  • Genetic Alliance Australia  provides peer support and information for individuals and families affected by a rare genetic condition or rare disease; links patients and families with disease specific peer support groups
  • Rare Voices Australia  RVA is Australia’s national rare disease alliance supporting all people living with a rare disease, advocating for health policy and healthcare systems
  • Steve Waugh Foundation  provides support for children and young adults living with the rarest diseases through grants, respite camps, supporting research and raising awareness

  • RareConnect  a world wide platform for rare disease patients and families where they can connect and join or develop online communities across continents and languages
  • Genetic and Rare Disease Network  (formerly the Genetic Support Council of WA) works to empower individuals and their families to reach positive health outcomes

  • ARCAN  Australian Rare Chromosome Awareness Network:  an organisation created by parents, for parents and the community; to raise awareness for rare chromosome disorders

  • SWAN  Syndromes Without A Name:  Information and support for families with a child with an undiagnosed or rare genetic condition

  • NORD  National Organisation for Rare Disorders:  US based site with information, tools and resources for patients/carers, clinicians and researchers

  • EURORDIS  Rare Diseases Europe:  Non-governmental world wide patient driven alliance

  • Bowel Group for Kids Inc 

  • InfoKid  information for parents and carers about children's kidney conditions 

  • VCFS 22q11 Foundation  The VCFS and 22q11 Foundation supports families and persons affected by VCFS or Deletion 22q11