“JABE BABE – A HEIGHTENED LIFE”
52 minute documentary
EDUCATION RESOURCES
PREPARED BY JANET MEREWETHER – AUGUST 2005
LIST OF AUSTRALIAN SUPPORT SERVICES AVAILABLE IN THE
AREAS OF GENETIC RESEARCH/CONSELLING, MARFAN SYNDROME,
SCHIZOPHRENIA, FOSTER CARE, CHILD ABUSE/NEGLECT.
GENETIC RESEARCH AND MARFAN SYNDROME
MARFAN SUFFERER SUPPORT ORGANISATIONS
Website – www.marfan.net.au
NATIONAL
Association of Genetic Support of Australasia (AGSA)
66 Albion St, Surry Hills NSW 2010
tel: +61 (0)2 9211 1462 fax: +61 (0)2 9211 8077
info@agsa-geneticsupport.org.au
http://www.agsa-geneticsupport.org.au
NATIONAL
Marfan Association of Victoria Inc.
PO Box 42, Sunbury VIC 3429 Australia
Justin Nix – 0417 358 549
Jnix@ssc.net.au
Sally Ferguson – +61 (0)3 578 41357
Yvette1@bigpond.com.au
VIC
Marfan Syndrome Association Inc.
PO Box Sumner Park, QLD, 4074
Tel: +61 (0)7 3376 6160
Marfanaustralia@hotmail.com
QLD
South Australian Marfan Support
Tel:+61 (0)8 8562 2299 0419 854 098
Margaret Roennfeldt
(this group is no longer active)
SA
CLINICAL GENETICS + MEDICAL SUPPORT SERVICES
The Centre for Genetics Education, NSW
Royal North Shore Hospital
PO Box 317
St Leonards NSW 1590 Australia
Dr Kristine Barlow-Stewart – Director
NSW
Genetics@med.usyd.edu.au
Tel: +61 (0)2 9926 7324 Fax: +61 (0)2 9906 7529
http://www.genetics.com.au
(counselling and information)
Genetic Health Services Victoria
10th floor, Royal Children’s Hospital
Flemington Road, Parkville 3052 VIC Australia
Tel: +61 (0)3 8341 6201
Dr Ravi Savarirayan
Ravi.savarirayan@ghsv.org.au
Clinic co-ordinator – Robin Forbes
Robin.forbes@ghsv.org.au
(information and support groups)
VIC
South Australian Clinical Genetics Service
Women’s and Children’s Hospital , North Adelaide
Tel: +61 (0)8 8161 7275
Professor Eric Haan
Sacgs@mail.wch.sa.gov
SA
Genetic Service of Western Australia
King Edward Memorial Hospital
374 Bagot Road Subiaco 6008 SA Australia
tel: +61 (0)8 9340 1525 fax: +61 (0)8 9340 1678
gswa@health.wa.gov.au
Professor Jack Goldblatt
WA
Queensland Clinical Genetics Service
Royal Children’s Hospital
Herston Road, Herston QLD 4029 Australia
+61 (0)7 3636 1686
qcgs@health.qld.gov.au
Dr Julie McGaughran – Principal geneticist
QLD
Clinical Genetics
Building 1, Level 5, Canberra Hospital
Yamba Drive, Garran 2605
PO Box 11, Woden ACT 2606
Tel: +61 (0)2 6244 4042
Senior Genetic Counsellor – Katie Battese
Katie.battese@act.gov.au
Genetic Counsellor – Linda Warwick
Linda.warwick@act.gov.au
ACT
Tasmanian Clinical Genetics Service
TAS
C/o Royal Hobart Hospital
GPO Box 1061 Hobart TAS 7001
Tel: +61 (0)3 6222 8296
Geneticist – Dr David Amor
Counsellor – Dr Jo Burke
Counsellor – Sonya Bacic sonya.bacic@dhhs.tas.gov.au
www.dhhs.tas.gov.au
Genetic Eye Foundation
Department of Opthalmology,
Prince of Wales Hospital Sydney
Tel: +61 (0)2 9382 2480
Head of Department – Dr Minas Coroneo
m.coroneo@unsw.edu.au
Volunteer researcher and newsletter publication – Bruce Stanhope
Stanhopeb@sesahs.nsw.gov.au
Dr Lesley Adès
Lesleya@chw.edu.au
Tel: +61 (0)2 9845 3273 Fax: +61(0)2 9845 3204
Children’s Hospital at Westmead
Department of Clinical Genetics
Locked Bag 4001
Westmead NSW 2145 Australia
(genetic research and clinical treatment)
FOSTER CARE INFORMATION / CRISIS SERVICES
Foster Care Association (NSW) Inc.
131 Hawkesbury Rd, Westmead NSW 2145 Australia
tel: +61 (0)2 9633 5816 fax: +61 (0)2 9633 4914
Donna Bain – Executive officer
Dbain@fcansw.org.au
NSW
Australian Foster Care Association
http://www.fostercare.org.au
NATIONAL
Association of Child Welfare Organisations
http://www.awca.asn.au
NATIONAL
DOCS (Department of Community Services)
http://www.community.nsw.gov.au
NSW
NSW Office of the Children’s Guardian
NSW
NSW Office of the Commissioner for Children and
Young People
NSW
NSW Ombudsman
NSW
HELPLINES – CHILDREN IN CRISIS
Kids Helpline (Boystown Organisation) 24 hours
www.kidshelp.com.au
Tel: 1800 551 800
NATIONAL
Lifeline
Tel: 131 114
http://www.lifeline.org.au
NATIONAL
DOCS Helpline – Children at risk in NSW
Tel: 132 111
NSW
Department for Community Development
24 hour crisis care (08) 9223 1111
tel: 1800 199 008
Family Helpline (08) 9223 1100
Tel: 1800 643 000
WA
Family services (helpline)
Tel: 1300 556 729
ACT
Family and Children’s Services
Tel: 1800 700 250
NT
Department of Child Safety
Tel: (07) 3235 9999
Tel: 1800 177 135
QLD
Child Abuse Report Line
Tel: 131 478
SA
Department of Health and Human Services
Child Protection Advice and Referral Service
Tel: 1300 737 639 (24 hour service)
TAS
Dept. of Human Services
After hours Child Protection Services
Tel: 131 278 (VIC. only) or
Tel: (03) 9843 5411
VIC
ADDITIONAL INFORMATION – CHILD ABUSE/NEGLECT
Australian Government
Australian Institute of Family Studies
http://www.aifs.gov.au/nch/issues/issues.html
National Child Protection Clearing House
(Discussion papers on child abuse and neglect)
See also
Senate inquiry into Children in Institutional Care
Create
Consultants, educators and advocacy group for children in care
Helpline: 1800 655 105
+61 (0)2 9267 1999
Dianna Dawson
Dianna.dawson@create.org.au
www.create .org.au
SCHIZOPHRENIA SERVICES
SANE Australia
Helpline: 1800 688 382
Schizophrenia Australia Foundation
PO Box 226,
Sth Melbourne VIC 3205 Australia
Tel: (03) 9682 5933
Andrea Kincade – Media Relations Manager
andrea.kincade@sane.org
(research, resources, media representation)
Mental Illness Fellowship of Australia (MIFA)
www.mifa.org.au
Schizophrenia Fellowship of NSW
Helpline: 1800 985 944
Gladesville Hospital Building 37
Digby Road Gladesville NSW 2111 Australia
Tel: +61 (0)2 9879 2600 fax: +61 (0)2 9879 2699
NATIONAL
Admin@sfnsw.org.au
http://www.sfnsw.org.au
see also fellowships in different states, such as
Mental Illness Fellowship of Victoria
SEXUAL ASSAULT SERVICES
Sexual Assault Services
(02) 9515 9040
c/o Royal Prince Alfred Hospital
Missenden Road, Camperdown NSW 2050 Australia
http://www.sexaulassault.net
NSW
see also services in each state
INTERNATIONAL GENETIC / MARFAN SUPPORT ORGANIZATIONS
Canadian Marfan Assocation,
Centre Plaza Postal Outlet
128 Queen St South
PO Box 42257
Mississauga, Ontario, L5M-4Z0
Canada
Tel: 0011 1 905 826 3223
Info@marfan.ca
http://www.marfan.ca
National Marfan Foundation
382 Main St
Port Washington, NY, 11050 USA
Tel: 0011 1 516 883 8712
Staff@marfan.org
http://www.marfan.org
Marfan Association UK
Rochester House
5 Aldershot Road
Fleet Hampshire, GU13-9NG UK
Tel: 0011 44 (0)12 52 810 472
Marfan@thenet.co.uk
http://www.thenet.co.uk/~marfan
International Federation of Marfan Syndrome Organisations (IFMSO)
http://www.marfanworld.org/
National Organization for Rare Disorders (NORD)
http://www.rarediseases.org
Mendelian Inheritance in Man On-line (OMIM)
http://www.ncbi.nlm.nih.gov/Omim