The following resources to help Australians with known or suspected DES exposure have been compiled by the organisation DES Action NSW. These resources are updated and provided routinely in the organisation's newsletter, The DESfactor. Please consider subscribing or making a donation to help this NSW based group continue its advocacy work for all Australians affected by the DES drug disaster. All help appreciated. (Details to subscribe/donate at blog item 23 April 2010)International Resources
DES Action USA www.desaction.org
US CDC DES Update www.cdc.gov/des
DES Research Information http://www.followupstudy.org/
(UK) Diethylstilboestrol -Journal of a DES Daughter http://diethylstilbestrol.co.uk/des-daughter/
Reseau DES France www.des-france.org
DES Centrum Netherlands www.descentrum.nl
DES Sons' International Network http://groups.yahoo.com/group/des-sons/
DES Sons:General Information http://groups.yahoo.com/group/des-sons/links
DES-L Group: Online closed discussion group for DES exposed women: http://groups.google.com/group/des-l?hl=en Email:des-l@googlegroups.com
DES Pregnancies Support www.onelist.com/subscribe/despregnancies
3rd Generation DES Exposed Support DESupport_3rdgen-OWNER@yahoogroups.com (Send name, email, gender, birth year and whether certain of exposure)
Parents of 3rd Generation DES Exposed Support DESupport_parent-subscribe@yahoogroups.com
Ireland DES Clinic: National Maternity Hospital, Holles St Dublin 2. Ph (01) 6373502 -Dr Myra Fitzpatrick
Advocates: New Zealand - Prof Charlotte Paul, Dunedin Medical School
Ireland - Aislinn Ni Eifearnain (Grealy), Dublin
Australian Resources
General Information www.cancercouncil.com.au/editorial.asp?pageid=248 , www.healthinsite.gov.au , www.betterhealth.vic.gov.au
National: Ph 03 83453045 (Royal Women's Hospital, Melb, 1800442007 for rural Vic callers)
NSW DES Action NSW www.desnsw.blogspot.com Ph 02 98754820 (national coverage)
Twitter@DESAustraliaNSW
Qld Women's Health Qld-Wide Ph 07 38399962 Toll free 1800017676
Relationships Australia www.relationships.com.au National counselling service Ph 1300 364 277 for nearest service.
Mothersafe Counselling Service (NSW) for exposures during pregnancy Ph 02 93826539 Toll free 1800 647848
TGA BLUE CARD : Forms to self-report adverse drug reactions, including DES related clear cell adenocarcinoma of the vagina/cervix and other known effects, eg, recurrent miscarriages, t-shape uterus, undescended testes. www.tga.gov.au/adr/bluecard.htm or Ph 180044114 (free call)/02 62328180.
Alternative is helpful service of Adverse Medicines Events (AME) Line 1300134237.
Forms to self-report DES related vaginal/cervical cancer to International DES Registry- Ph 02 98754820
FACEBOOKS
DES Action USA
WONDER DRUG
DES (diethylstilbestrol) Info
Diethylstilbestrol, Journal of a DES Daughter
2 comments:
Where has the public petition gone to? it isn't mentioned anymore on your website Carol.
Wondering why no longet there as well as why the website is difficult to navigate.
Thanks a lot
The item about voting for the DES issue on GetUp's website can be found at blog item 15/2/11, titled "Voting for DES Awareness" . This blog site aims to be informative, without being repetitious. However, advertising the GetUp petition is a good idea. This is currently being done in the DES Action Australia-NSW newsletter, "The DESfactor", Soon a facebook and twitter account will be set up, in which there can be frequent notices about the GetUp petition. Re navigation difficulty, the site works well for selecting specific topics, ie, by clicking on each month on the front page index. However to read chronologically (like reading a book), it helps to print up the item topics and tick this off as you read them.
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