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Forum on transition to adult health services: Experiences of young people living with rare diseases Transition Forum for Young People Living with Rare Diseases
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Document Date: 2013-07-21 19:53:37

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File Size: 2,09 MB

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City

Beville / Victoria / /

Company

Office Works / Agency for Clinical Innovation Transition Care / Nandos / Agency for Clinical Innovation / No. LP / Starbucks / /

Country

Australia / /

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Facility

CoOp Bookstore / University of Sydney / The University of Sydney / Sydney University / /

IndustryTerm

care for children diagnosed with rare diseases / potential practical solutions / health services / potential solutions / paediatric site / multidisciplinary services / paediatric health services / food / paediatric and adult services / appropriate services / apsu@chw.org.au Web / parent/carer groups / appropriate adult health services / community health services / focus groups / adult health services / care of people with chronic complex rare diseases / transition services / /

MedicalCondition

each rare disease / Ehlers-Danlos syndrome / Rare childhood diseases / Rare Diseases / rare chronic and complex health problems / each single rare disease / lung diseases / rare chronic diseases / alopecia / chronic and disabling diseases / infrequent / rare diseases / such diseases / cystic fibrosis / different rare diseases / Phelan McDermid syndrome / Klippel-Trenaunal Syndrome / Rare Diseases Transition Rare Diseases / Disease / Rasmussen’s encephalitis / chronic leading / rare disease / complex and chronic cases Better recognition / narcolepsy / Duchenne Muscular Dystrophy / Klippel-Trenaunay syndrome / congenital panhypopituitarism / cataplexy / /

MedicalTreatment

counselling / /

Organization

Australian Paediatric Surveillance Unit / University of Sydney / Sydney University / medicare / SMILE Foundation / NSW Agency / Department of Health / /

Person

Imogen Yang / Megan Fookes / Jade Mangan / Changing / Lesley Murphy / Tam Johnston / Evie Smith / Perspective Inadequate / Elizabeth Elliott / Jude Foster / Catherine Gasparini / /

Position

Accessing General / AusLan interpreter / General / Executive / invited speaker / Rare Diseases Transition Contents Executive / /

ProvinceOrState

Western Australia / Victoria / /

Region

Western Australia / /

Technology

GPS / /

URL

http /

SocialTag