Advanced therapies handbook | Educational resources | The Sydney Children's Hospitals �ǿ��

Advanced therapies handbook | Educational resources

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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Rare Diseases NSW

Rare Diseases NSW are a comprehensive centre of expertise incorporating excellence in clinical care and research to enhance wellbeing of those affected by rare conditions across the whole lifetime.

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Association for Children with a Disability (ACD)

ACD provide resources produced by parents for parents.

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Disability Advocacy Resource Unit (DARU)

DARU are dedicated to working with disability advocacy organisations to promote and protect the rights of people with disability.

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Genetic and Rare Diseases (GARD)

The GARD Information Centre supports people living with a rare disease and their families by providing free reliable information.

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Healthy Mothers Healthy Families (HMHF)

HMHF is a program aimed at supporting the mothers of children with a disability with a particular focus on education around healthy lifestyles for the entire family.

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Orphanet

Orphanet house a directory of rare diseases, orphan medicines, patient organisations, professionals, expert centres, diagnostic tests, research projects, clinical trials, registries and biobanks.

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Raising children (rare diseases and conditions)

Government funded organisation with expert reviewed advice about raising children with rare diseases.

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Caregiver Action �ǿ��

Caregiver Action �ǿ�� 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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Rare Voices Australia (RVA)

RVA is the national body for Australians living with a rare disease. They provide workshops, webinars, and customised mentoring support.

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Siblings Australia Inc

Siblings Australia are a resource to support the siblings of a child with disability.

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SWAN Australia

SWAN Australia supports children with undiagnosed and rare genetic conditions.

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