France / Canada / Australia / United Kingdom / Italy / United States / /
Currency
USD / EUR / /
Event
FDA Phase / /
Facility
Australian Institute / Paediatric Surveillance Unit The University / The Children’s Hospital / Hospital Steve Waugh Foundation National Perinatal Statistics Unit / General Practice Australian Paediatric Surveillance Unit The University of Sydney Respiratory Department / Telethon Institute / Royal Children’s Hospital / Westmead Telethon Institute / Child Health Research Telethon Institute / Royal Australasian College of Physicians Western Clinical School / /
IndustryTerm
specialised health services / media awareness campaigns / integrated health services / health services / tertiary services / healthcare professionals / treatment of rare diseases / surveillance systems / specialised services / integrated peer support networks / medical services / healthcare delivery eg / secure internet access / community services / child services / prevention of rare diseases / care for people with rare diseases / secondary and tertiary health services / information portal / healthcare / paediatric health services / difficulty accessing health services / peer support services / fragmented services / /
MedicalCondition
rare diseases / Elliott E. Rare childhood diseases / Aperia A. Why rare diseases / different rare diseases / Many rare diseases / every disease / diseases / evidence-based rare diseases / single rare diseases / common diseases / Rett Syndrome / fetal alcohol syndrome / specific diseases / disease / rare disease / undiagnosed diseases / individual rare diseases / Orphan Lung Diseases / Infectious Diseases / Context Rare diseases / Numerous rare diseases / /
MedicalTreatment
counselling / /
Organization
Child Health Research Telethon Institute / Royal Children’s Hospital / Westmead European Organisation for Rare Diseases / University of Sydney / Sydney Children’s Hospital / National Perinatal Statistics Unit / Telethon Institute / Paediatrics & Child Health Division / Task Force / SMILE Foundation / Office for Rare Diseases20 / Western Clinical School / European Council / European Union / Child Health Research Centre for Community Child Health / New Zealand Organisation for Rare Diseases / New South Wales Commission for Children and Young People Women / Australian Institute for Health & Welfare Health Services Policy Branch / Office for Rare Diseases / Office for Rare Diseases and the Undiagnosed Diseases Program / National Institute of Health / National Organisation for Rare Diseases / Australian Paediatric Surveillance Unit / University of Sydney Respiratory Department / Canadian Organisation for Rare Diseases / Royal Australasian College / European Organisation for Rare Diseases / National Rare Diseases Task Force / European Union Task Force for Rare Diseases / Therapeutic Goods Authority / Westmead Telethon Institute for Child Health Research Community Child Health Services / Association of Genetic Support of Australasia / Senior Researcher Executive Director New Zealand Organisation for Rare Diseases / Policy Division / /
Person
David Sillence / Anne Lind / Arch Dis / Elisabeth Murphy / Yann Le Cam / Elizabeth Sullivan / Dianne Petrie / Elliott E. Rare / Neil Wigg / David Isaacs / Anne Cutler / Andrew Knight / Sydney Children / Jerome Parisse / Adam Jaffe / Evie Smith / Steve Waugh / Elizabeth Chatham / Helen Leonard / John Christodoulou / Melissa Wake / Fiona Stanley / Yvonne Zurynski / Sydney John Forman / / /
Position
Executive Officer / Executive Director / Chief Executive Officer / OAM Director / Staff Specialist / Brassens Journalist / AC Director / Advocate / Assistant Director Senior Lecturer Head / CEO / Carol Bower Head / Clinical Consultant / representative / AM Director National Working Group Prof Elizabeth Elliott / Director of Research / Consultant / Policy Advisor / actor / Senior Lecturer / Director Communications and Development / Director Prof Carol Bower / Founder and Chairman Director / Jennifer Proimos President / Professor of Paediatrics and Child Health / Director / Advocate for the development / /
Microsoft Word - Rare diseases National Plan-Final Draft19-01-10