While we aim to keep all lists of links of high quality, the inclusion of a link does not imply that APEG endorses or otherwise approves that site or the information contained therein. Members must make their own judgment about any information that they obtain from any linked site
Professional Societies:
- Urological Society of Australia and New Zealand.
- RANZCOG
- International Classification of Pediatric Endocrine Diagnoses (ICPED) – a comprehensive diagnostic list for endocrine diagnoses (APEG associated worldwide collaboration). Scroll down page to individual chapters on each diagnostic group.
Support Groups:
- CAH Support Group (Australia)
- CAH Living as Neighbours (CLAN)
- MAGIC Foundation (USA) – Growth support group with CAH section
- CAH Support Group (USA)
- Climb Congenital Adrenal Hyperplasia UK Support Group
- AISSG – Androgen Insensitivity Syndrome Support Group (Australia)
- AIS/DSD Support Group (USA)
- Accord Alliance
- Turner Syndrome Association of Australia
- CARES Foundation
- Hormone Health Network (USA)
- Australian X & Y Spectrum Support
- BEECHAC group (bladder exstrophy and hypospadias etc)
- Daisy Network (premature ovarian insufficiency)
General DSD Resources for Families and Health Professionals:
- DSDfamilies
- DSDteens
- DSD Genetics
- Health of people with intersex variations – Victorian Department of Health Resource (March 2019)
Other resources and links:
- Hormones and Me Booklet Series. CLICK HERE to find the books listed below
- Congenital Adrenal Hyperplasia (CAH)
- Management of Emergency or Stress Situations
- EndocrineWeb.com Adrenal Resources
- Hydrocortisone Injection Instruction Leaflet
- CONGENITAL ADRENAL HYPERPLASIA: A Parents’ Guide (Paperback) by C. Y. Hsu (Author), Scott A. Rivkees (Author) 2005;(ISBN10 1420806491; ISBN13 9781420806496)
- RCH Department of Gynaecology
- Living with Androgen Insensitivity Syndrome (UK)
- VIC Gov Neonatal Handbook – hypospadias
- Children’s Hospital Colorado: X&Y chromosome variations
- TSSG UK (Turners Syndrome Support Society)
- IHRA Intersex Human Rights Australia
- Consensus Statement: Global Disorders of Sex Development. Update since 2006: Perceptions,Approach and Care (Hormone Research in Paediatrics Jan 2016)
Tests:
- CAH Gene tests (Mater Pathology)
- CAH Blood Spot testing for 17OHP (Mater Pathology)
- Androgen Insensitivity gene test (Androgen Receptor)
- Genetic testing for DSD without known cause is available on a research basis at the Murdoch Children’s Research Institute Molecular Development Group in Melbourne.
- Patients who are eligible include those with:
- 46 XY karyotype and female phenotype or under-virilisation including perineal hypospadias
- 46 XX karyotype with testes
- 46 XY karyotype and testicular regression syndrome (anorchia)
- Ovotesticular DSD
- Additional DSD patients including those with MRKH/Mullerian agenesis, POIExclusion criteria are patients with known causes of DSD, such as sex chromosome aneuploidy (Turner, Klinefelter), confirmed androgen insensitivity, enzyme deficiency or congenital adrenal hyperplasia.Please email andrew.sinclair@mcri.edu.au for more information and to obtain consent forms.
- Patients who are eligible include those with:
Last comprehensive update completed on 25 May 2018.