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Important Links
The Australian Paediatric Surveillance Unit | Rare Diseases
www.apsu.org.au
Orphanet | About rare diseases. How to obtain information about a specific disease.
Orphanet is a database of rare diseases which is freely accessible.
NIH Office of Rare Diseases Research (ORDR) | Coordinates research and information on rare diseases USA.
The Children's Rare Disease Network | An online portal for building community and collaboration among families affected by rare disease.
The Rare Project | A new initiative to raise awareness and accelerate the development of therapies for rare diseases.
Rare Disease Day 2010 | Raises awareness with policy makers and the public of rare diseases.
Rare Share | A unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.
AGSA | The Association of Genetic Support of Australasia Inc.
SMILE Foundation | Supporting Medical Innovation for Life Enhancement.
NORD | Disease Information from National Organization for Rare Diseases.
Syndromes Without A Name USA. (SWAN)
MDA | The Muscular Dystrophy Association
Muscular Dystrophy Association of NSW (MDNSW)
Redkite | provides hospital based support, community based support,financial assistance and education services to families across Australia.
Montrose Access | The Queensland Society for Crippled Children
Redkite | Supporting children and young people with cancer and their families – in hospital and in the community.
Contact a Family | For families with disabled children.
Centre for Genetics Education | Provides current and relevant genetics information to individuals and family members affected by genetic conditions and the professionals who work with them.
Northcott Disability Services
Northcott Equipment Solutions (NES) | Equipment Solutions, sales, expert advice and service of products which allow people with disabilities to achieve greater mobility, independence and freedom, are all in one organisation.
The Spastic Centre | Cerebral Palsy
C P Australia | Cerebral Palsy
HeartKids Foundation
Livewire | Provides free and safe online communities for families affected by a serious illness, chronic health condition or disability.
Technical Aid to the Disabled NSW
| TAD uses volunteers dedicated to the design, construction and provision of aids for people with disabilities. Members of TAD provide a resource pool comprising of a range of design, engineering, rehabilitation, computer, therapy and other professional and technical skills.
DADHC - The Department of Ageing, Disability and Home Care | Improving services and promoting opportunities for older people, people with a disability and their carers to participate in the wider community and to have a better quality of life.
Commonwealth Carelink
Physical Disability Council of NSW | Provides a state-wide voice for people with a physical disability.
Centre for Genetics Education (Part of NSW Health)
BEECHAC | Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias, Australian Community (Inc.)
Spinal Muscular Atrophy Association of Australia
Carers Australia
AMDF - Australian Mitochondrial Disease Foundation
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