1. Skip to Menu
  2. Skip to Content
  3. Skip to Footer>

PDF  | Print |  Email

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)
Beautiful You MRKH Foundation

Beautiful You MRKH Foundation is a supportive online community working to help women feel beautiful exactly as they are. They work with healthcare professionsals to move towards acceptance and understanding of MRKH.

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 hypospadiasand 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 chromosomesand 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 hormonedeficiency 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

Quality Care Indicators

View a summary of indicators of high-quality interdisciplinary care for children with disorders of sex development (DSD).

Click to view.

Review Expert Presentations

Pediatric Academic Societies Mini-Course on DSD Disclosure, University of Michigan DSD Research and Quality Improvement Symposium, and more.

Click to review.

Questions Answered

Find clear answers to common questions about disorders of sex development (DSD) at Accord Alliance's Frequently Asked Questions page.

Click to access.

Clinical Pearls

At the Accord Alliance blog, specialists on dedicated DSD teams share their experiences with team-building, reimbursement issues, and more.

Click to read the blog.

Meetings Upcoming

Find dates and informational links for conferences on disorders of sex development (DSD), including meetings of clinicians and support groups.

Click to view.