Parents Portal: Resources for Parents & Families

INFORMATION FOR PARENTS

 

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LINKS TO USEFUL WEBSITES

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

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

  • Genetic Alliance Australia  geneticalliance.org.au  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  rarevoices.org.au  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  stevewaughfoundation.com.au  provides support for children and young adults living with the rarest diseases through grants, respite camps, supporting research and raising awareness

  • RareConnect  www.rareconnect.org/en  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  geneticandrarediseasenetwork.org.au  (formerly the Genetic Support Council of WA) works to empower individuals and their families to reach positive health outcomes

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

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

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

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

  • Bowel Group for Kids Inc  www.bgk.org.au 

  • InfoKid  www.infokid.org.uk  information for parents and carers about children's kidney conditions 

  • VCFS 22q11 Foundation  www.22q.org.au  The VCFS and 22q11 Foundation supports families and persons affected by VCFS or Deletion 22q11