Advanced therapies handbook | Disease specific support and communities
We are always updating our resources. We encourage you to discuss with your medical team about the best options specific to your circumstances.
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Association for Children with a Disability (ACD)
Biography
ACD advocates for children with disability and their families, offering 100 free online workshops each year and a series of resources aimed at connecting to families to disability-specific organisations
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Genetic Alliance Australia
Biography
Genetic Alliance Australia is a charity that provides peer support and information for families affected by rare genetic conditions and rare diseases.
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MyTime
Biography
MyTime is a support organisation that provide free group sessions for parents and carers of children with disability and other conditions.
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Caregiver Action 星空体育
Biography
Caregiver Action 星空体育 is a leading family caregiver organisation to support the quality of life for those caring for loved ones, including those with rare conditions.
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National Organisation for Rare Disorders (NORD)
Biography
NORD is a non-profit organisation aimed to providing support for those with rare diseases through research, education and service facilitation.
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Rare Disorders NZ
Biography
Rare Disorders NZ supports information and support structures for the rare disease community in New Zealand specifically.
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Rare Voices Australia (RVA)
Biography
RVA is the national body for Australians living with a rare disease. They have a support directory organised by disease name.
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SWAN Australia
Biography
SWAN Australia supports children with undiagnosed and rare genetic conditions.
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