Links

Medical links

Diseases Database: index of human diseases, medications, symptoms, signs, etc, and search portal.

OMIM (Online Mendelian Inheritance in Man): catalogue of human genetic disorders, disease-associated genes and disease-causing mutations.

 

Support and advocacy group links

Accord Alliance: promotes effective management of DSD, rights of those affected, and engagement with the medical profession and the research community. Guides to understanding and dealing with DSD are available for download from this website.

dsdfamilies: an information and support resource for families with children, teens and young adults who have a DSD.

Organization International Intersex (OII): advocates for the human rights of people with intersex variations, provides peer support and education, and engages with researchers and clinicians. Submissions on health and human rights issues are available for download from this website. 

 > See also: Organization International Intersex Australia

Androgen Insensitivity Syndrome 
Support Group (AISSG) 

 > See also: AISSG Australia

AIS-DSD Support Group (USA): a compassionate community of diverse individuals, families and allies collaborating to promote better lives, informed decision-making through advancement of knowledge, and a world that accepts those born with differences of sex development.

CAH Support Group

Turner Syndrome Association of Australia

Rare Voices Australia

 

Ethical, legal and human rights links

On the management of differences of sex development: Ethical issues relating to “intersexuality”. Swiss National Advisory Commission on Biomedical Ethics, November 2012, Opinion No. 20/2012. (28-page pdf, 216kb download) discusses terminology, provision of counseling and support, and medical and legal ethics. 

Decision-making principles for the care of infants, children and adolescents with intersex conditions. Department of Health, Victoria, Australia, February 2013. (31-page pdf, 348kb download) describes medical, human rights, ethical and legal principles to be applied to decision-making with the stated aim of safeguarding the best interests of patients.

Australian Government Guidelines on the Recognition of Sex and Gender. Government of Australia, Attorney-General's Department, July 2013. (16-page pdf, 247kb download) discusses the difference between sex and gender, and how the Australian Government deals with diversity on sex and gender for the purpose of maintaining consistent records. 

 

Registries and research/clinical network links

I-DSD network: The I-DSD Project supports collaboration between clinicians and researchers in investigation of the conditions associated with DSD through use of the International DSD registry. The main aim of the project is to increase knowledge and understanding of these rare conditions and ultimately improve patient care. 

DSD network: An online registry for DSD diagnosis, management and research, aiming to co-ordinate sample collection, annotation, sharing, and analysis of DSD across Australasia. The objective is to better serve those affected by DSD through more effective research and clinical care.

 

Research links

Koopman laboratory

   > Peter Koopman bio

Sinclair laboratory

  > Andrew Sinclair bio

Harley laboratory

  > Vincent Harley bio

National Health and Medical Research Council of Australia

 

Institutional links

Institute for Molecular Bioscience

The University of Queensland

Murdoch Children's Research Institute

Royal Children's Hospital, Melbourne

The University of Melbourne

Prince Henry's Institute

 

 

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Last updated: 29 September 2015

Edit history: Author P. Koopman 10/13; revised 10/13, 3/14, 7/15, 8/15