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NORD National Organisation for Rare Disorders: US based site with extensive information, tools and resources for clinicians, researchers and patients/carers rarediseases.org
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Centre for Genetics Education NSW Health web portal for health professionals focussed on genetic conditions; provides fact sheets and guidelines genetics.edu.au
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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 geneticalliance.org.au
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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 rarevoices.org.au
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Steve Waugh Foundation provides support for children and young adults living with the rarest diseases through grants, respite camps, supporting research and raising awareness stevewaughfoundation.com.au
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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 www.rareconnect.org
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SWAN Syndromes Without A Name: Information and support for families with a child with an undiagnosed or rare genetic condition swanaus.org.au
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NORD National Organisation for Rare Disorders: US based site with information, tools and resources for patients/carers, clinicians and researchers rarediseases.org
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EURORDIS Rare Diseases Europe: Non-governmental world wide patient driven alliance eurordis.org
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InfoKid information for parents and carers about children's kidney conditions infokid.org.uk
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22q Foundation Australia and New Zealand supports families and persons affected with 22q11.2 Deletion or 22q11.2 Duplication Syndrome 22q.org.au
