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AIS

Androgen Insensitivity Support Group

Focus: AIS

The  Androgen Insensitivity Syndrome Support Group (AISSG) is a consortium of worldwide support groups that owe their origins to the UK-based group which was started in 1988. AISSG provides information and support to young people, adults and families affected by XY-female conditions such as complete and partial Androgen Insensitivity Syndrome or AIS (old name Testicular Feminization Syndrome or Testicular Feminisation Syndrome). They also support those affected by Swyer's Syndrome ( XY Gonadal Dysgenesis),  5-alpha Reductase Deficiency, Leydig Cell Hypoplasia, Mayer-Rokitansky-Kuster-Hauser (MRKH) Syndrome, Mullerian Dysgenesis, Mullerian Duct Aplasia, Vaginal Atresia, and other related conditions. Some information is provided in multiple languages.

Visit: Androgen Insensitivity Support Group (USA)
Androgen Insensitivity Support Group (UK, but contains much valuable information)

Magic Foundation

Focus: AIS, CAH, epispadias, hypospadias, Klinefelter Syndrome,
Mayer-Rokitansky-Kuster-Hauser Syndrome, Turner Syndrome
Major Aspects of Growth In Children (MAGIC) is made up of 25,000+ families whose children (and affected adults) have growth hormone deficiency or other medical conditions which affect their growth. They have a subgroup called Genital and Reproductive Anomalies in Children.

Visit: Magic Foundation

Events

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Handbook for Parents

handbook_125
Click to learn more

DSD Clinical Guidelines

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Click to learn more

DSD Symposium

University of Michigan “DSD Research and Quality Improvement Symposium” (April 2009)

Click to review conversation topics

When To Tell the Patient?

Lawson Wilkins Pediatric Endocrine Society and Pediatric Academic Societies Mini-Course on Disorders of Sex Development (DSD) – When To Tell the Patient? (May 2009)

Click to review the presentations

 

III World Congress

on Hypospadias and Disorders of Sex Development.

The 3rd World Congress took place in North America for the first time. The congress was held both at the Hospital for Sick Children and at the Marriott Hotel Toronto Eaton Centre in November 2009.