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Advocacy and Support Groups

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)

 

Cares Foundation

Focus: Advocacy and Support Groups, CAH
CARES Foundation is a nonprofit organization committed to improving the lives of families and individuals affected by Congenital Adrenal Hyperplasia (CAH) through proactively advancing research for better understanding of CAH, better treatments and a cure; educating the public and healthcare professionals about all forms of CAH; advocating for universal newborn screening; and providing support services and resources vital to the CAH community worldwide.

 

Visit: Cares Foundation

 

Hypospadias & Epispadias Association

Focus: Advocacy and Support Groups, epispadias
Education and support for people dealing with hypospadias and epispadias.

 

Visit: Hypospadias & Epispadias Association

 

Klinefelter Syndrome & Associates

Focus: Advocacy and Support Groups, Klinefelter Syndrome
KS&A’s mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.

 

Visit: Klinefelter Syndrome & Associates

 

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

 

MRKH.org

Focus: Mayer-Rokitansky-Kuster-Hauser Syndrome
A support group for women with Mayer-Rokitansky-Kuster-Hauser Syndrome (also known as MRKH, Mullerian Agenesis, Vaginal Agenesis, and Congenital Absence of Vagina).

 

Visit: MRKH.org

 

Turner Syndrome Society of the US

Focus: Turner Syndrome
The members of our society have offered a wealth of support for over 20 years. We understand that every person’s needs are unique as Turner syndrome affects each girl and woman in a different way.

Education is our foremost goal whether you are a member of our society or a guest you can access, for free, all educational and medical information. Our most popular items are the Turner Syndrome Clinical Guidelines, National Conference, Volunteer Support (parents and adult women that “have been where you are”), and Local Chapter and Support Group information.

Visit: Turner Syndrome Society of the US

 

XY Turners

Many clinicians were taught that only girls can have Turner's syndrome. While it is technically correct that pure Monosomy X always results in a girl with Turner's syndrome, children with XY/XO mosaicism, whether girls or boys, may have any of the symptoms associated with Turner's syndrome.

The mission of xyTurners is to provide information, advocacy, and networking for
  • parents whose child has been diagnosed in utero as XY/XO
  • parents making decisions regarding childhood genital surgery
  • parents making decisions regarding XY/XO medical issues
  • parents of children with a gender identity disorder
  • XY/XO adults
  • physicians seeking information on XY/XO-related medical conditions
  • physicians seeking information on childhood gender disorders
  • students, researchers, and others studying XY/XO issues.
Visit: XY Turners

Events

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Handbook for Parents

handbook_125
Click to learn more

DSD Clinical Guidelines

guidelines_125
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.